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MY ASHLAND DAILY TIDINGS ESSAY: "Vaccination is Protection"
For me, vaccinating my children is an act of protectiveness, not passive compliance. Haunting childhood images of polio victims trapped inside breathing machines surely influenced my appreciation of vaccines, but even I sometimes felt trepidation, especially reading pharmaceutical inserts and Center for Disease Control fact sheets delineating side-effects.
I heard vaccine opposers insisting vaccines don’t work, aren’t necessary, cause untold injuries and deaths, that unvaccinated kids are healthier, refusers more intelligent, natural alternatives available and herd immunity a lie.
Embarking on a personal quest about a decade ago to sort fact from fiction, I learned the importance of seeking science-based sources and of honing my “baloney detection” abilities.
After studying the vaccine debate I came to this conclusion: Not much is 100 percent safe or effective, but the most credible sources reveal vaccine benefits far outweigh their rare serious risks, saving lives and reducing suffering.
Governmental, independent, and research organizations worldwide are committed to maximizing vaccine safety and effectiveness. Meanwhile, anti-vaccine assertions are often fallacious, scientifically unsupported and misleading – yet compelling enough to result in destructive outbreaks and derailment of disease eradication efforts.
I first encountered anti-vaccine sentiment in Ashland when my teenage son was a baby. A dad announced: “I won’t poison my daughter’s pristine system with vaccines!” My reflexive response: “Fine, our vaccinated children will protect yours.” I received a disturbing introduction to “herd immunity” relaying this story to our pediatrician: “You’re not protecting his child as much as his child is putting yours at risk,” she said. Maximum protection depends upon the community.
Vaccination neglect, refusal and delay threaten our community’s well-being, and while I empathize with parents’ fears and concerns,it’s hard to contain resentment for authority figures who twist facts and spread misinformation.
1. Your source, Judicial Watch, appears to promote a conservative political/social agenda, and is not a scientific evidence-based source of vaccine information. Their anti-Gardasil stance is likely motivated by the fear that Gardasil will encourage teens to have sex.
2. Gardasil (or any other vaccine) is certainly not promoted as side-effect free. I know of no medicine or medical practice, conventional or alternative, that can make that declaration.
3. VAERS (vaccine adverse event reporting system) reports are completely transparent to the public, with an online searchable database. Anyone can order full reports. In fact, it is VAERS’ transparency that, while commendable on the one hand, makes it easy for people to misinterpret or misuse the information. A bank of passively collected, largely unverified reports of a temporal (time) connection between two events is not causation data. “Post hoc ergo proctor hoc” (after an event, therefore caused by it) is a logical fallacy. Every reporter should understand this before declaring things like: Gardasil is “killing young girls.”
4. Your citing the Natalie Morton case as evidence of a high-profile Gardasil death actually *exemplifies* this fallacy. A few minutes of Googling would have revealed this article: “Cervical cancer jab girl Natalie Morton died from large chest tumour.” Quote: “There is no indication that the HPV vaccine, which she had received shortly before her death, was a contributing factor to the death, which could have arisen at any point.” And: “…Evidence from the coroner is absolutely clear that the vaccine did not cause Natalie’s death.”
5. The CDC says that as of 9/30/2010 VAERS included 56 reports of deaths (only 30 confirmable) occurring at some point following a Gardasil vaccination. After 32 millions vaccine doses, it would be bizarre (or indicative of amazing protective properties) if a number of deaths/serious disorders did not coincidentally occur within months of the shot.
6. Public health officials closely investigated and analyzed all the confirmable reports of death and serious conditions, finding little to no difference compared to background rates, and no patterns or clusters indicating severe vaccine reaction. This vaccine is regarded as remarkably safe, overall. (Read article.)
7. You suggest Gardasil wasn’t tested on 9 year olds. Safety studies and immunogenicity tests included ages 9 and up, and “immunogenic bridging” was used to discover efficacy for the 9-15 year olds. [Note: The previous sentence was slightly edited from the original and the next sentence deleted because I lost confidence in the accuracy of the source.] At this time, the CDC recommends Gardasil just for girls starting at ages 11-12, optional for girls and boys as young as 9 years old. Some believe that the strong immune response observed in 9 year old could make the vaccine last longer and be more effective. So, we can ask why so young, or we can ask why wait.
8. You said: “I’d like to find out how many teen girls die from genital warts or cervical cancer.” The answer is probably zero, but a child’s risk of dying from an HPV-related cancer is irrelevant; cancer can take decades to develop. A better question is: How many teen girls are sexually active and/or become infected with HPV? In a 2005 survey, 3.5% of participants said they were sexually active before age 13. By 13-19 years old, an estimated 35% of teens are HPV infected, and it increases from there. In most cases the virus disappears naturally, but can be ruining when it doesn‘t. (HPV transmission doesn‘t require sexual intercourse, and condoms aren‘t fully protective.) The idea is to get kids vaccinated before sexually active because if any of the four vaccine-types HPV is acquired before vaccination, the vaccine isn’t protective against that type.
9. You said: “I am wondering if the death rates for these illnesses are high enough to make this vaccine warranted in any way.” In the US, cervical cancer strikes about 12,000 (I read 15,000 also) women yearly, with about 4000 deaths/year. But, vaccines are not just about death rates. Gardasil may be protective against 70% of cervical (and genital) cancers — mostly curable, but cervical and genital cancer and cancer treatments cause suffering, carry risks (e.g. of hysterectomy), and are very expensive.
Significant too is that Gardasil can help prevent the distress, discomfort, risks, and financial burden of treating most serious pre-cancerous lesions (dysphasia).
The bonus is that Gardasil could help prevent 90% of genital warts cases that currently afflict millions –usually transient, painless, and mild, but some cases are debilitating and relentless, and it is highly contagious.
Inoculating boys/men could reduce most HPV-related male cancers and warts, as well as reduce transmission of HPV to their female partners for whom it is most dangerous.
So, is Gardasil worth the risk? I’m not completely sure myself, but only armed with facts rather than distortions can we begin to answer this question. I hope you correct your misleading statements, not just in a footnote or buried among the comments, but right up front.
Huffington Post commenter "Sheldon101" explains the facts behind the anti-vaccinationist rumor (not something mentioned by Jennifer Margulis) that FDA documents showed that if a woman previously infected with HPV gets vaccinated with the HPV vaccines, her risk of getting cervical cancer (or, a variation of the rumor: her risk of getting pre-cancerous cervical lesions) increases 44.6% with Gardasil and 32.5% with Cervarix. August, 2010.
[Similar to many communities in the U.S. and abroad, conflict erupted when AT&T applied to install an antenna station on the roof of the cinema in my town, Ashland, Oregon. The owners of a neighboring non-conventional health center were devastated and sounded the alarm. All the practitioners who rent space from them said they would not work so close to a cell tower. The City Planning Commissioners, compelled by Federal law prohibiting cities from denying cell antenna station applications based on environmental/health concerns, reluctantly approved AT&T’s application. Yet, the drama continues to unfold as the wellness center owners rally public support while appealing the approval. Meanwhile, knowing very little about scary-sounding “radiation,“ I decided to explore credible information to find out the risks, sorting fact from fiction. This essay was published in the Ashland Daily Tidings.]
Some say AT&T’s insistence on placing their cell phone antennas on the roof of the cinema in the Ashland Shopping Center is corporate bullying and an affront to Ashland’s values, as many nearby (non-conventional) healthcare practitioners and their clients fear these antennas emit harmful radio frequency (RF) radiation.
I suspect that AT&T’s motives reflect the community’s values, as we increasingly value and demand tiny, richly-featured mobile phones with excellent reception. While spearheading public and legal opposition, the neighboring Hidden Springs Wellness Center owners reported: “I have a cell phone; almost everybody has a cell phone these days.”
Opponents insist Ashland law mandates AT&T to co-locate with other antennas, e.g. at the less densely populated Holiday Inn location. There is no isolated tower there; the existing antenna site is situated on the building, populated with overnight guests and workers, near other hotels, restaurants, a brewery, a temple, homes, etc. When AT&T argued there’d be coverage deficits, an opponent claimed that AT&T can amplify the signal, which would raise RF emissions. Some opponents insist AT&T can co-locate with the broadcast radio antennas at SOU---adding more purportedly harmful RF radiation in the heart of the campus. Sounds like anything goes, just “not in my backyard.”
Exploring this subject, I found that greater population density often necessitates more base antennas to satisfy reception demands and overcome physical obstacles (e.g. buildings). Some cities have hundreds of cell stations. It’s the nature of the beast. The beauty is that city-wide antenna stations are generally very low powered. And, they share the load, meaning lower RF emissions from each station. Moreover, cell phones emit less RF when the provider’s antennas are nearby, as phones power-up while searching for a signal.
Hidden Springs reported their opposition is not about health risks---not to declare antennas safe but “because federal law won’t let the city use health effects as a criteria.” It’s about perception of risk causing financial impacts. Thirteen practitioners renting space at Hidden Springs, and several patrons, said they’d leave.
Fostering or supporting unsubstantiated RF fears that threaten businesses and property values could become a self-fulfilling prophecy. Instead, the Hidden Springs owners could choose to use their perceived health authority to alleviate these fears with reassuring information from credible sources. I offer the following:
Radio frequency radiation
The maximum RF power radiated by antennas commonly used in cities is typically just 50 watts---equivalent to a dim light bulb.
You’d have to stand on the roof closer than three feet from the front of a station’s antennas, all transmitting at maximum permitted intensity (uncommon), to exceed the FCC’s safe exposure limit for the public.
RF exposure decreases exponentially with distance. E.g. within the transmitted beam, exposure 200 feet away would be a miniscule 1/40,000 of that at one foot.
The public’s RF exposure from numerous antenna stations in an area is typically trivial---thousands of times less than the FCC‘s safe limit.
Even some researchers who suggest cell phones pose health risks will suggest cell towers are safe; e.g. Dr. Peter French reported: “…the amount of power that one gets from mobile phone masts [towers] is very much less (than cell phones) and likely to be biologically inert.”
Today’s cell phones emit just 1 watt, or much less, of radiated power---equivalent to a pen light.
“No recent national or international reviews have concluded that exposure to the RF fields from mobile phones or their base stations causes any adverse health consequence.” (WHO, 2005)
RF is “non-ionizing” radiation, thus regarded as unable to alter DNA molecules to cause cancer directly. Implausibility should raise the evidence-bar for proving otherwise.
So far, alarming RF studies have tended to be weak ---too small, too biased, etc.. (Two Viennese lab studies showing DNA damage from RF radiation stand accused by their ethics board of falsification.)
Radiation isn’t synonymous with radioactivity and emissions doesn’t mean pollution. In scientific parlance, even the colors of the rainbow emit radiation (visible light).
The recently summarized “Interphone” study conducted by 13 countries found no overall association of cell phones with brain tumors. Moreover, brain tumor rates haven’t risen even as cell phones and RF antenna stations proliferate.
A huge Danish study, using records rather than memory of past phone use (eliminating recall-bias afflicting many other studies), found no association with brain or various other cancers after 10+ years use.
Some sources cherry-pick alarming studies while peddling dubious RF “shields” or RF absorbing jewelry (or related: “dirty electricity filters”). If a product substantially blocks a cell phone's RF radiation, the user's exposure would increase as phones power-up to find a signal.
Meta-analysis of RF-provoked hyper-electromagnetic sensitivity studies overwhelmingly found misattribution of symptoms to RF radiation or the nocebo effect (adverse reaction due to expectancy of harm).
RF radiation is ubiquitous, both natural---mostly from lightning and the sun---and human-generated with the proliferation of products and their associated antennas, e.g. cell and cordless phones, handheld devices, wireless computers, baby monitors, automatic doors, remote controls, radio and TV broadcasts, amateur radio, medical devices, CBs, pagers, 2-way radios (often used by cities, education systems, emergency services), etc.. You'd be hard-pressed to find an RF-free zone most anywhere.
Relocating from a cell antenna station installed on a neighboring building would trivially reduce your overall RF exposure (and again, could increase it if you use cell phones). Sunlight is a vastly more energetic and higher-powered source of EMF exposure, and carries ionization risks (from ultraviolet frequencies) not seen with RF radiation. You'd be better off taking in a movie at a cinema topped with cell antennas operating at full capacity than standing out in the bright sun worrying about the antennas (not to minimize the health benefits of some sun exposure).
"Making Sense of Radiation," published 2008 by Sense about Science, a registered charity, London, UK. (Note: This excellent pamphlet can be printed and shared; licensed under Creative Commons Attribution.)
"Dialling up an old panic. What's behind the claims that it's riskier to use a mobile in the country than it is in the city?" by Adam Burgess; Spiked, May 27, 2005. (Includes a critique of Lennart Hardell's studies.)
A Redskins ambassador cheerleader struck with horrific dystonia and seizures after a flu shot! Real? Psychosomatic? Hoax? Follow me as I apply some critical analysis to this story; then you decide.
Surfing the Web after reading a well-reasoned and informative article published by Wired magazine, "An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All," * by Amy Wallace, I came upon an alarming and disturbing video about a young woman from Virginia named Desiree Jennings. A Redskins ambassador cheerleader, college student, marathon runner, wife, AOL marketing communications manager - struck with a devastating movement disorder: dystonia.
What's more, the media reported that doctors at Johns Hopkins and Fairfax Inova hospitals, both highly reputable mainstream institutions, had diagnosed Jennings dystonia as a side-effect of her seasonal flu vaccination.
Gulp! I had just gotten the seasonal flu shot myself.
I watched several of the media videos, stunned, as Desiree Jennings demonstrated how she now walks: She approached the camera, struggling to move forward, knees bending almost to the ground, upper body pumping up and down with each labored step, arms thrashing and flailing, hands pulled inward. Striking was that Jennings could run with grace and ease, and walk backwards perfectly, even down a staircase.
Her speaking abilities seemed to take several dramatic twists. The Loudoun Times-Mirror * (a Virginia paper) reported that Jennings' dystonia had reduced her speaking ability to a mere whisper. Just two days later, she is heard speaking audibly to local FOX 5 news -- but not well, just one word at a time, her head bobbing with each word. Another mid-October television interview showed Jennings emitting several words at a time, and with perfect enunciation. Around the same time, she is shown with extremely slurred speech as she explains to viewers that her tongue and neck had become paralyzed and couldn't move. Incredibly, even with debilitating neck and tongue paralysis, her speech recovered completely as soon as she would start running or walking backwards.
Something about this brain disorder story caused the healthy tendrils of skepticism to begin to invade my own brain, especially as I began to notice a number of incongruities not mentioned by the reporters:
For one, I tried to speak as if my tongue were paralzyed, as Jennings had reported, and I could not speak nearly as well as she had. And it seemed strange to me that in spite of wrenching, twisting, full-body convulsing, she didn't fall down while trudging long stretches toward the camera (although in the breaking media story, she reported having fallen, landing her husband "with one leg in a heavy cast" from a broken foot trying to catch her - an injury that must have healed quickly, as it is not evident or mentioned in any broadcasts with her husband.)
I watched as an excited Inside Edition TV reporter informs viewers that Jennings' spasms and speech impediment return as soon as she stops running, yet I could see in two clips that Jennings actually had not stopped running before demonstrating the return of the full-blown spasms. One story reported that her spasms returned "the second she crossed the finish line" of a race she had entered; she was probably still running at that point, as runners typically don't abruptly stop at the finish line.
And, in spite of rigid, wildly flailing, spasming arms and hands, in more than one clip she appeared to suddenly regain the control and coordination necessary to rest her hands on her knees and to quickly tuck her hair behind her ear. While one video showed her walking down the street with upper body bending up and down with each step, arms jerking and thrashing, another video showed her walking down a hallway with her back perfectly straight and upright, arms swinging wildly but rythmically.
Now, anyone would be completely exhausted with, as reported, several bouts of full-body spasming and 20-30 smaller "seizures" each day (the media reported on but didn't show any seizures - unless they mistakenly believe that all involuntary movements and tremors are "seizures"); inability to eat without convulsing or passing out; having to either run or walk backward to get anywhere; a paralyzed tongue and neck. Yet unbelievably Jennings completed an 8 km race with grace and smiles. The caption for a photo of Desiree Jennings on Inside Edition's website reads: "Desiree was joyous while taking part in a five mile run, during which she could move comfortable and speak normally."
Not knowing anything about dystonia, I searched for information and watched videos of dystonia cases on the Internet, reading that dystonia can sometimes appear rapidly, be episodic, unpredictable, and task-specific; it can appear peculiar in its presentation. Some dystonia victims can walk backwards or run better than walking forward; some who can't speak can suddenly do so with a "sensory trick," such as touching their face or chewing gum. (Jennings has described to a reporter that she was able to use sensory tricks, at first, to speak and walk.)
I learned that, in part, because of the inconsistencies and anomalies that may occur with dystonia, some true dystonia victims are tragically misdiagnosed with a "psychogenic" or a "factitious" movement disorder - both involuntary mental disorders presenting with physical symptoms; or worse, with malingering (consciously pretending, usually to gain something of value).
Still, even knowing this, the more I learned about true dystonia and about the flu vaccine, and the more I reviewed Jennings' interviews and demonstrations on various Internet videos, the more I found myself thinking the F-word (faking).
DESIREE JENNINGS: ANTI-VAX ACTIVIST
Sticking in my craw: In spite of experts vehemently reporting, even within the same stories reporting on Jennings' case, that severe reactions to flu immunizations are extremely rare; urging people not to be afraid; assuring that this vaccine has an excellent safety record; explaining that the good far outweighs the bad as vaccine saves many lives (40,000,000 or more people perished in the 1918 global influenza epidemic; an estimated 36,000 die of flu-related illness every year in the US), Desiree Jennings seemed disproportionately vehement in her anti-vaccine proclamations, publicly railing against the vaccine with dire, unsubstantiated warnings generalized from her own (purported) experience:
In the breaking story, Nicholas Graham (Loudoun Times-Mirror) * reported Jennings' warnings: "Don't get the flu shot if you're healthy and not at risk,' she implores. She claims doctors at Fairfax and Johns Hopkins hospitals agree." (Did they really agree? Keep reading.) The same reporter then countered Jennings warnings with a caution from the Director of the Loudoun Health Department: "We know in Loudoun if no one got vaccinated more would get sick and potentially more would die. There are always rare side effects.but seasonal flu is a major killer of otherwise healthy people." He strongly advised that the benefits of flu shots outweigh the risks.
Knowing that serious vaccine reactions are extremely rare, Jennings persisted nevertheless, with warnings such as these found in various media reports: "I want people to look at me and know this could happen if you get the flu shot." And: "I just don't want this to happen to anyone else." And: "[I want to] get back to my normal life, but still have had a chance to warn people as well."
Within a day or so of the first FOX 5 report, Generation Rescue came to Jennings' rescue - an organization supported by celebrities Jenny McCarthy and Jim Carrey that actively refutes vaccine safety and blames vaccines for neurological impairments well beyond what rigorous science indicates, while promoting medically unfounded "Biomedical" treatments for developmental disorders such as autism. Referring to stories Generation Rescue had sent her about children with (purported) disabling vaccine reactions, Jennings bewailed on camera: "I can understand it happening to an adult, but not a little child that hasn't had a chance to live their life and can't speak, so I want to speak. They can't, and I want to help them, too."
Jennings posted this public message on the webpage that Generation Rescue had initially set up for her on their site (later disontinued), which now appears on some anti-vaccine/autism websites, promoting their vaccine "alternatives":
"I set up this site to tell my story and warn people of the neurological side effects than can result from vaccinations; especially knowing that in the majority of cases, these stories are seldom heard outside of immediate families and friends. I hope everyone that reads my story will heed my warning and think very carefully, including watching my story, reading the information about vaccine side effects on this website, reading the vaccine package insert, considering the natural remedies for flu and H1N1 on this site, and seeking out consultations with the doctors found on this website, before making the decision to receive a vaccination."
Interesting is that Jennings' current website includes this statement but with the last paragraph redacted: "I hope everyone that reads my story will heed my warning and think very carefully, including seeking out consultations with your family doctor, before making the decision to receive a vaccination." (The vast majority of family doctors easily support vaccinations.)
A press release on her current site says this about Jennings: "She is more than ever, driven by a desire to educate others to be informed of the potential side effects caused by vaccines and prevent others from suffering a similar fate."
Feeling skeptical of her movement disorder, and hearing all this anti-vax sentiment, and seeing her immediately connect with Generation Rescue without hesitation or question, I had to wonder: Could this be an anti-vaccine publicity stunt?! But why would someone purposely put herself through invasive medical tests for a non-existent condition, paying out-of-pocket expenses; missing work; risking loss of her new Redskins ambassador cheerleader position; missing time at college (presumably); and subjecting herself to public scrutiny and an increasing amount of ridicule?
Unfortunately, hoaxes do happen, even as often detrimental to the perpetrators. (At around the same time this story broke, the father of "balloon-boy" perpetuated a hoax that gripped the world and nearly landed him in prison; and as I write this article, a couple may face criminal charges after crashing a White House dinner.) Vaccine-related: Dr. Andrew Wakefield's notorious vaccine research, which purported to link the MMR vaccine to gastrointestinal disorders and autism, not only led to outbreaks of debilitating and deadly measles in communities around the world but crushed his reputation as a credible scientist (although anti-vax groups still cite his studies, and desperate parents still subject their children to his risky diagnostics - colonoscopies - and unfounded autism treatments - chelation - at his clinic: Thoughtful House.) [January 28, 2010 update: The UK's General Medical Council has just ruled on the case that was brought against Dr. Wakefield more than two and a half years ago.] *
An anti-vaccine hoax that a flu shot caused a horrific dystonic reaction would do a disservice to many: To those who believe the story and will avoid vaccinations because of it, leaving them vulnerable to extreme sickness, disability, or death from preventable diseases. To true dystonia victims who, if this is found not to be a true movement disorder, have enough trouble battling misperceptions of malingering (faking) or that their symptoms are "all in their head." And, ironically, to those voicing legitimate vaccine safety concerns who could lose credibility by having defended a hoax.
As for Jennings' story, time will soon tell, I surmised, as to whether or not this is true dystonia. True dystonia victims suffer for the long haul, while it would be tough to keep up a pretense of body-wrenching spasms, backward walking, and non-stop seizures for very long, especially as the media and public were watching her every movement. She'd have to come up with some kind of "alternative" miracle-cure pretty soon, I figured. So, I was not surprised, actually somewhat amused, when that was what happened.
THE TRUTH ABOUT TRUE DYSTONIA
As Desiree Jennings' story began to spread virally over the Internet, most comments, it seemed to me, were along the lines of: I will never, ever get a flu shot after seeing this! That poor woman. Those who say she's faking are insensitive scum. Some venomously attacked government agencies, the medical establishment, and "big pharma" for poisoning us all with their lies and profit motives.
Before long, however, a media interview surfaced with Dr. Leigh Vinocur, Emergency Medical physician at the University of Maryland who zealously revealed that the kind of dystonic reaction to a flu vaccine demonstrated by Jennings is not mentioned in any of the medical literature. Further, Dr. Vinocur said she had conferred with neurologists at Johns Hopkins (the same facility that had purportedly diagnosed Jennings with dystonia from a vaccine reaction), and with Dr. William Weiner, chair of the neurology department at the University of Maryland, and others specialists, who watched the media videos and all felt that Jennings' symptoms are not a true dystonic reaction - rather, more consistent with a psychogenic disorder (psychological/pyschosomatic). In fact, she indicated that some experts were using these videos to teach about psychogenic movement disorders.
Subsequently, Dr. Stephen Grill, Director of the Parkinson's & Movement Disorder Center at the University of Maryland was interviewed by FOX 5. Dr. Grill concurred that the symptoms he saw demonstrated on video - the way she walked and her stuttered speech - were not commonly seen with true dystonia but more so with a psychogenic movement disorder; similarly, for example, to how anxiety can heighten nervous tremors.
Then, the Dystonia Medical Research Foundation * weighed in with this public statement on their Website:
"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. Since there has never been a validated case of dystonia resulting from a flu shot, the experts polled believe this case should not deter anyone from getting a flu shot."
Dr. Weiner soon elaborated in a Consumer's Report Health Blog article by medical advisor Orly Avitzur, "Video of flu shot cheerleader is misleading," on why he does not believe Jennings' symptoms are neurological:
"It was very sudden in onset-true dystonia has a slow onset and, if it progresses, does so very gradually. The movements are not characteristic of dystonia or, for that matter, of any other known movement disorder. Her speech has an unusual staccato pattern which is not seen in any neurological disorder and the degree of impairment is quite inconsistent. The return of all normal motor behavior and speech when running forward is not consistent with true dystonia. The report of additional neurological problems such as paralysis of the tongue, but normal speech while running is not consistent with true neurological problems." *
THE ARMCHAIR DOCTORS WHO STOOD UP
After these experts began to weigh in, Generation Rescue suddenly removed Jennings' webpage from their site, appearing to drop their support for Jennings' story for a time - but soon posted a statement defending her while admonishing and denigrating the professionals who suggested her symptoms were psychogenic:
"Many parents of children with autism would not be surprised to see that the vaccine makers have mounted a response to Ms. Jenning's heart-wrenching story. We've seen doctors on TV, who have never examined Ms. Jennings themselves, speculate that her injury is all in her head, a "psychogenic" disorder. This is an astonishing breakdown in medical ethics."
Podcast radio host Robert Scott Bell, who became a cheerleader for the unsupportable vaccine-reaction treatments Jennings ended up receiving, disparagingly referred to these specialists as "telegenic armchair quarterback doctors."
But in fact, these doctors had very clearly prefaced their opinions with the disclaimer that they cannot make a complete diagnosis based on video. And they never intimated, as does Generation Rescue (and some other like-minded sites) that a psychogenic movement disorder is somehow a lesser disorder than true dystonia - they are both involuntary conditions. Beside, I would imagine that video is invaluable to movement disorder specialists for case analysis, research, and educational purposes. (I can't even imagine on what basis Generation Rescue refers to these doctors as "the vaccine makers?")
Moreover, once Jennings' compelling story went public - especially as reporters were asserting that experts from two credible mainstream hospitals had diagnosed her with dystonia from a flu shot reaction - these experts felt it was not only their right to comment, but their obligation. Vaccination fears like this can spread contagiously, especially over the Internet, and lead to public health disasters: outbreaks of severe sickness, injuries and deaths from preventable diseases. (Even as this story becomes "yesterday's news," Jennings' media reports come up on top of the list when Googling: "flu shot reaction.")
Dr. Weiner stated his reasons for speaking out, as reported in the Consumer Report Health Blog article on November 2:
While physicians, including Dr. Weiner, are generally reluctant to discuss cases of patients that they haven't personally examined, Dr. Weiner spoke out because of the ramifications to consumers. "This has nothing to do with the flu vaccine. There are no previously reported cases of dystonia following the flu vaccine. This is a public health policy issue because people are being scared away from getting vaccinated," he said."
Dr. Grill's altruistic interest in this story seems clear, as he told me himself when I contacted him: "This news story was a big disservice both to Ms. Jennings and to the public. It seems that enough people are not getting the flu shot because of this so that surely there will be deaths from the flu as a result."
A quick Google search easily shows us that these so-called "armchair quarterback doctors" have the right stuff: Dr. Leigh Vinocur is not only an Emergency Medical physician, but also an author, consultant, instructor, community educator, board member for a domestic violence responder program, honoree of several community service awards. Dr. Weiner is not only the chair of a university neurology department, but a distinguished researcher who has published 15 neurology textbooks and more than 175 professional articles on the diagnosis and treatment of movement disorders, among other accomplishments. Dr. Grill is not only the director of the Parkinson's and Movement Disorders Center of Maryland but also its co-founder. He is an honored medical advisor for the Dystonia Support Group of Greater Washington DC; and an adjunct faculty member at Johns Hopkins University where he is responsible for the care of patients undergoing deep brain surgery. Dr. Grill was the recipient of the Dystonia Doctors of Excellence Award in 2003.
In stark contrast to these specialists, the doctor to whom Generation Rescue referred Desiree Jennings for vaccine-reaction treatment, Dr. Rashid Buttar, currently faces charges of unprofessional conduct brought to the N.C. Medical Board by a number of former patients (or their representatives, as three died of their disorder) for receiving very expensive but unproven and ineffective treatments and unnecessary tests.
And, is it even accurate to say that only doctors who hadn't examined Jennings believe that her symptoms are psychogenic? Apparently not.
Looking at the VAERS database, * the government's reporting system for adverse events following vaccinations, I read what must be the report on the Jennings' case (ID 359903-1) - or that of some other woman from Virginia who just happened to be in the same age bracket and have substantially the same story and timeframes (extremely unlikely). Referring to an October 2nd hospital visit, the report says:
"The admitting neurologist felt that there was a strong psychogenic component to the symptomology, and made a final diagnosis of weakness."
A psychogenic disorder is a "real" disorder (involuntary, but primarily psychological rather than neurological). Generation Rescue should have encouraged Jennings to seek expert opinions from movement disorders specialists and psychiatrists to ensure she would receive the most appropriate treatment. One media report indicated that Jennings planned to go to the Mayo Clinic in November. What, or who, derailed her from doing that?
THE HOPKINS/INOVA DYSTONIA FLU SHOT REACTION DIAGNOSIS - REAL, RUSE, OR RUMOR?
While the online VAERS report certainly pokes a big hole in the assertion that experts at Johns Hopkins and Inova hospitals had even diagnosed Jennings with an "organic" disorder, the report is truncated and may not reflect subsequent interactions. If the assertion were true, this would certainly inject some mainstream credibility into her story, and justify her believing it.
Searching the media reports for evidence of their claim that doctors at Johns Hopkins and Fairfax Inova had diagnosed Jennings with dystonia, or any neurological disorder, and that her condition resulted from her flu vaccination, I saw none. In fact, it appears that Jennings herself never asserted, in her public statements or through direct quotes to the media, that specialists (or any doctors) from Johns Hopkins or Fairfax Inova had given her such a diagnosis.
October 13, the breaking story was published in the Loudoun Times-Mirror * (local Virginia print and online media). The reporter Nicholas Graham, a friend of Jennings' (as he did disclose) made a point of reporting the source of Jennings dystonia diagnosis:
"Desiree proceeded to go back to Loudoun Hospital, then Fairfax Hospital, then Johns Hopkins in Baltimore to see specialists. None could give a diagnosis."
[...] "Desiree has seen her primary care physician, physical therapists, speech therapists, neurologists, neuropsychologists, psychiatrists, and a bevy of nurses. Amazingly, it was her physical therapist at Johns Hopkins who provided the latest, clinical diagnosis as to what Desiree has: Dystonia."
[...] "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."
So we see: She reportedly received a dystonia diagnosis from a physical therapist, not a doctor, at Johns Hopkins. Therefore, "her doctors" who reportedly were "convinced" that she had dystonia and that it resulted from a flu vaccine would have to have been some other doctors whom she had consulted, not the hospitals' doctors. Considering how very unlikely it would be that mainstream specialists would be so easily convinced that she exhibited a true movement disorder, let alone that it was a flu vaccine side-effect, we have to wonder: Had Jennings already consulted with some "alternative," anti-vaccine doctors before she went public with her story? Interestingly, no details have been provided by Jennings or the media on "her doctors," the ones who had diagnosed her with a flu vaccine side-effect.
Further, it came to my attention that, undisclosed to the public, WTTG FOX 5 Segment Producer Annie Yu is an ambassador cheerleader for the Redskins, as is Desiree Jennings, and they are friends, which might explain FOX's decision to broadcast this story without much critical analysis or regard to public health ramifications.
On October 13, FOX 5 aired, "Woman Disabled by Flu Shot Reaction," by Claudia Coffey, injecting the story with this stunning and oft-repeated believability booster: "Doctors at Fairfax Inova and Johns Hopkins diagnosed her with a rare neurological disorder called dystonia. They think it was caused by a severe reaction to the flu shot."
The story provides no substantiating evidence for that extraordinary claim. The reporter quotes an Inova Health System manager (who works hard to promote vaccinations as part of a wellness program), Rachel Lynch. It is apparent, to me, that Ms. Lynch presumed Jennings' had, in fact, been diagnososed by specialists with a terrible disorder from a flu shot reaction. She wasn't asked if the claim was true. She is much more focused on reassuring the public, expressing the rarity of such a severe type of reaction:
"The flu shot is safe for the majority of the public, and as I said before, your heart goes out to someone that experiences this sort of thing - thinking that they are doing something great for their wellness and their general health, but it does happen in extremely rare cases."
Two days later, October 15, FOX 5 aired another story by Claudia Coffey, "Celebs Reach Out to Desiree Jennings - Local woman disabled by flu vaccine reaction." Coffey reported about Jennings:
"She first spoke to FOX 5 about a severe reaction she suffered after getting a seasonal flu shot. Now, both Fairfax Inova and Johns Hopkins say Desiree suffers from a rare neurological disorder as a result of the flu shot. The condition is called dystonia." (Actually, FOX 5 had already made that contention in their first report.)
This time, part of Jennings' Johns Hopkins medical record is flashed on the screen, presumably evidence to back this claim. I hit pause several times; no such diagnosis is shown. A section was highlighted, but this section showed only what the patient reported experiencing after her flu vaccine, beginning with: "Multiple somatic complaints following seasonal flu vaccine."
First, the term "multiple somatic complaints" is often used when doctors suspect a psychological disorder, e.g. anxiety, stress, depression, underlying the somatic (bodily) complaints. Further, it appears this reporter believed or wanted viewers to fall for the "post hoc ergo proctor hoc" logical fallacy whereby a temporal (time) relationship is assumed to be a causal one. Science 101: The fact that B (e.g. somatic complaints) follows A (e.g. an influenza vaccination) doesn't mean that A must have caused B. Oh if it were only that easy to discover the cause of all our disorders; doctors and scientists could dispense with all those expensive, invasive diagnostic tests and rigorous scientific experiments trying to tease-out causation from coincidence and intervening variables.
On or close to the same day, a local WUSA 9 report aired, "Woman Says Flu Shot Triggered Rare Disorder," by Surae Chinn: "She's seen more than 60 doctors. She says all of them were stumped until Johns Hopkins diagnosed her with dystonia." The reporter does not indicate the source of this purported Johns Hopkins diagnosis; she could well be referring to the physical therapist mentioned in the first story. For most of this article, Jennings is expressing her own assessment:
"She believes her seasonal flu shot triggered it."
[...] "She doesn't know what else it could be but she has serious questions about the seasonal flu shot."
[...] "Desiree says, 'Nothing else explains such a fast moving neurological damage."
The very next day, this same reporter ups the credibility ante with a follow-up story and this headline: "Doctors Back Woman's Claim Of Adverse Reaction To Seasonal Flu Vaccine." Referring to Desiree Jennings, Chinn reports:
"She claims it's because of a reaction to the seasonal flu vaccine. Doctors at Inova Health Systems and Johns Hopkins back that claim."
[...] "Johns Hopkins and Inova Fairfax documented Jennings's symptoms and told her she suffered from an adverse reaction from the seasonal flu vaccine."
Flashed on the screen, we see part of an Inova hospital medical record, along with the same Johns Hopkins medical record that FOX 5 had displayed - still, the diagnosis is not displayed. And again, we hear from the same wellness care manager at Inova Health Systems who was previously interviewed by FOX 5, Rachel Lynch. (And again she presumed rather than substantiated the diagnosis, and emphasized the "extremely, extremely" low risk of such an event.)
Around the same time, on October 15, Inside Edition ran a story: "Bad Flu Shot Reaction?" The reporter exclaims:
"Believe it or not, doctors at world renowned Johns Hopkins Medical Center say it's the result of a simple flu shot. 'Nothing else could explain such a fast and damaging neurological condition,' Desiree says."
[...] "Doctors say it triggered a rare neurological disorder they're calling a-million-to-one reaction to the flu shot."
Does this reporter then substantiate the claim about Johns Hopkins? No. Instead we get a quote from FOX News medical correspondent, Dr. Marc Siegel:
"Her twisting and jerking movements are the result of uncontrollable muscle contractions. There's no known cure. It is a very very heartbreaking situation, and it certainly looks like a dystonic reaction to me. [It's a] very, very bad neurological situation for her and my heart goes out to her," he says." [...] "It is so rare that it is much more important to be afraid of the flu than a flu shot," says Dr. Siegel."
So here we have a "doctor on TV" who believed Jennings' media videos demonstrated true dystonia. But Dr. Siegel is not a doctor from Johns Hopkins or Inova Health Care Systems who would have examined and diagnosed Jennings, nor their representative. And he's not a neurologist or movement disorders specialist. It is likely that he simply presumed that specialists at the hospitals had made this diagnosis, as the media had been reporting.
In the October 21 FOX 5 interview with Dr. Stephen Grill, movement disorders specialist at the University of Maryland, the reporter introduced the story: "Doctors at Fairfax Inova and Johns Hopkins say Desiree suffers from a rare neurological disorder called dystonia." The reporter then tells Dr. Grill: "I guess there's a conflict between some of the doctors as to whether or not this is true dystonia." Dr. Grill appears to answer in the affirmative, and then states his own opinion that Jennings' symptoms appear to be psychogenic in origin. The reporter presses the matter, saying to Dr. Grill: "Now, in Desiree's case, at least her symptoms were close enough to dystonia for doctors at Inova and Johns Hopkins to believe that is what she had." Dr. Grill doesn't dispute the source of the dystonia diagnosis, and continues to elaborate on his own opinion.
From this interaction, listeners might infer that experts at these hospitals had, indeed, established a dystonia diagnosis (and that Dr. Grill and some others simply disagree). I contacted Dr. Stephen Grill to ask him about this myself. He explained: "Because of privacy issues (patient confidentiality), the physician at Hopkins cannot speak about this (case). So we are simply going on the word of Ms. Jennings that physicians at Hopkins and Inova made a diagnosis of dystonia."
So now we see, Dr. Grill was not confirming (nor denying) the reporter's statements that doctors at these hospitals told Jennings she has dystonia; and the reporter hadn't asked him that. Had he been asked, he wouldn't have been at liberty to say, as he is on staff at Johns Hopkins. He expanded upon and reinforced what he had reported in the FOX 5 interview, telling me: "Every movement disorders specialist I have spoken with agrees that this is a psychogenic (psychological) condition."
Revealing is that Jennings' herself doesn't mention Johns Hopkins or Fairfax Inova at all on her own website. These hospitals are only mentioned in a couple of comments by Jennings'defenders to her accusers, illustrating how the credibility of highly regarded experts and institutions can make an otherwise very dubious story sound convincing to some people. One insists, "He(r) condition is real, as certified by john hopkins physicians." Another chides, ".so you claim Desiree is shamming? Then she must be a very good actress.and the doctors at John Hopkins should be fired for incompetence.Its much easier to believe you are upset at Desiree's improvement from what was diagnosed BY doctors at John Hopkins as Dystonia."
A press release, dated November 4, on Jennings' website mentions only this about her diagnosis: "Jennings was misdiagnosed multiple times with a variety of diagnoses since receiving the influenza shot, which she thought would protect her from illness." And, in Generation Rescue's statement of support for Jennings on their site, they don't say she reported getting a diagnosis of dystonia from the hospital doctors; they say: "According to media reports, Ms. Jennings was suffering from a medical condition known as dystonia."
Some of the media still reporting on this story, to date, continue to use the reputation of Johns Hopkins and Inova Fairfax to lend mainstream credibility to their reports. On November 19, FOX 5 aired an update on Jennings' new treatment, by Claudia Coffey, stating again: "Johns Hopkins and Fairfax Inova diagnosed her with a rare reaction to the flu shot that resulted in dystonia, a rare neurological disorder."
SO, STOP THE PRESSES! It is incumbent upon the media, and Jennings, to provide evidence for their assertions that Jennings (1) was diagnosed with true dystonia, (2) that it was a flu vaccine side-effect, (3) that doctors at reputable hospitals gave her that diagnosis. If they cannot do this, then they should immediately issue a retraction and apologize to the public. If Jennings misled the reporters, or passively allowed these claim to continue, it is her moral duty to set the record straight.
(Update 12/20/2009: It appears that the DesireeJennings.com website has been inactivated.)
Loudoun Times-Mirror, by Nicholas Graham. October 2009. [The breaking news story about his friend, Desiree Jennings.]
"MMR doctor 'failed to act in interests of children," press release on Guardian.co.uk. January 28, 2010. [The UK's General Medical Council has finally ruled on the case that was brought against Dr. Wakefield more than two and a half years ago at a cost of more than £1million. The Guardian describes this decision (paraphrased): Dr. Wakefield "failed in his duties as a responsible consultant"; "showed a "callous disregard" for the suffering of children involved in his research; acted dishonestly, was misleading, and irresponsible in how he described his research that was later published in the Lancet medical journal; went against the interests of children in his care; and, his conduct brought the medical profession "into disrepute" after he took blood samples from youngsters at his son's birthday party providing payments of £5 each.]
"The Vaccine War," produced by Frontline, PBS Broadcasting. [I was honored to be interviewed for this important documentary, as my community (Ashland, Oregon) has an alarmingly low vaccination rate: "It's an outbreak waiting to happen." My proverbial 15 minutes of fame consists of about 1 minute, in the first segment.]
"Indigo - The Color of Money." critical analysis of a spokesperson for the Indigo Child movement. [Note that Jenny McCarthy, an affiliate of Generation Rescue mentioned in this article, announced at one time that her son was an Indigo Child.]