Don't Call it "Research"

It has become standing advice in all camps—from pediatricians and public health officials to anti-vaccine mouthpieces and chiropractors: do your own “research” on vaccines and then come to a reasoned decision about whether you want to vaccinate your child. Imbedded in that directive is the suggestion that all parents have both the specialized education and critical thinking skills required to do biomedical research.

Of course that’s not what medical professionals are suggesting when they tell their patients to "research" vaccines. But they have acceded to the widespread misuse of the word “research” to describe web-based information gathering, and in doing so have tacitly agreed that Google searches, Facebook surfing, and reading the CDC’s website is equivalent to research. It’s not research. It’s reading. It’s information gathering, the way we gather information to build our family tree. It’s trying to making sense of complex scientific information the vast majority of us were not educated specifically to deconstruct. But it’s not research, at least not the way the term is used in medicine and science.

Part of the problem is the way the word has been loosely applied to any kind of information gathering—from genealogy to looking for the best esthetician in New York, we tend to refer to our efforts as “research.” And in some ways, perhaps, this term could be considered accurate in such contexts. After all, Merriam Webster defines research merely as a “careful and diligent search.” Most people would agree, however, that there’s a difference between a "careful and diligent" search for the best CSA and a "careful and diligent" internet search on whether vaccines are safe. That’s because scientifically valid information about vaccines is based on scientific research, which can be defined as the application of the scientific method to the investigations of natural phenomenon.

I believe it's time to change the language we use when we encourage parents to use available information to make a decision about whether to vaccinate their child. Let's take the word "research" out of the conversation and thereby avoid hinting that such information gathering is equivalent to the work done by vaccine researchers, biologists, and medical professionals.

I say this as a veteran “researcher” myself. I’m a parent of two children, and when my first was born, I was what is now termed “vaccine-hesitant.” I wasn’t fervently anti-vaccine, but I was scared. So I began reading about vaccines, and, like many new parents, I simply typed “vaccines” into Google. The first site that came up was the vaguely governmental-sounding National Vaccine Information Center. It described itself as a “clearinghouse” of vaccine information. The only thing that tipped me off to its anti-vaccine stance at first were the advertisements for Joseph Mercola’s alterna-empire. (Tanning beds, anyone?) Still, I deposited this late-night study into my “research file.” I spent hours upon hours reading until my eyes crossed. Deep down, I knew when I was in over my head, though I pretended to myself that I understood what I was reading when I began to gather research articles. Though the NIH helpfully links to any number of research papers on vaccines, they don't provide a translator.

Still, if anyone had ventured to tell me at that time that what I considered diligent research was not, in fact, research, I would have been offended. After all, I was good at it. I’d written a well-received book of narrative journalism that had required several years of archival research, interviews, even a Freedom of Information Act request resulting in reams of hydrological charts and paperwork, all of which I carefully studied. I had a Master’s degree from an Ivy League university. I was good at this.

It was only much later, when I went from vaccine-hesitant to vaccine advocacy, that I realized just how arrogant I’d been. And it all came down to this: I thought I knew more than my doctor. Or if I didn’t know as much as she did, I could catch up with a few weeks of serious "research." Her medical school education, her extensive reading, and her long clinical experience meant nothing to me if I could not come to the same conclusion about the safety and effectiveness of vaccines using what information I had at hand. 


Astonishingly, medical providers are enabling this point of view—for understandable reasons. One of the reasons parents were opting out of vaccines was because doctors were often not taking their concerns seriously. Part of this, I suspect, has to do with the fact that the science is so overwhelmingly clear that vaccines are beneficial to the human species. Vaccination became as foundational a part of childhood preventive medicine as a weight check or an eye test. Questioning the necessity of a footing may strike an engineer, for example, as bonkers. But a question about its safety should be heard. 

And too often it wasn’t. The result was more and more parents choosing not to vaccinate their children. Now the pendulum swings wide the other way, where many medical providers and public health officials fear that the only way to bring vaccine-hesitant parents back into the fold is to put their abilities to discern the safety and efficacy of vaccines on par with that of their providers. Hence, the gentle suggestion for parents to “do their own research.” But we are not on equal footing when it comes to science. That’s not how science works. We shouldn't blindly follow the recommendations of our medical providers--frankly, we shouldn't do that in any realm of our life. But at the same time, we need to understand our limitations. And in the vaccine conversations, few of us parents have acknowledged the fact that we might not know as much about vaccines as the people who study them.

In fact, we live in a society that grapples with basic scientific literacy. Take, for example, the fact that in a recent Pew Research study on Americans’ grasp on science and technology issues that fewer than half of Americans knew that an electron is smaller than an atom. More than 80% of Americans did not know that nitrogen made up most of our atmosphere.

The “highly educated” gambit doesn’t work when it comes to vaccines, either; if anything, it makes us, as parents, more susceptible to falling into the anti-vaccine camp because we overestimate our abilities to research. We think because we researched Ovid’s The Metamorphosis for our thesis that we can fully understand why a paper about the peripheral blood mononuclear cells of autistic children and whether the measles virus persists in them exonerates the MMR vaccine from any connection to autism.


So I want to propose something that in this day of conspiracy theories and artisinal, small-batch internet research, is radical: people with medical degrees know more about medicine than those of us who don’t have medical degrees. More, they know how to write research papers on immunology, vaccinology, or infectious diseases, and they know how to read and make sense of them. The vast majority of us do not. 

In this time of measles outbreaks and pertussis clusters, it's time for parents to practice a little humility and trust what we do know: vaccines are one of the most successful medical interventions in modern history, they save countless lives, most of them in the developing world, and they have a long and proven track record of safety. And the research on this is clear.

Moms Who Vax: Breastfeeding, Baby-Wearing, and Vaxxing

 By Kim Norton-Jurgens

I breastfeed my children until they self-wean – openly in public. I baby wear and partially attachment parent.  I aim for drug-free natural births.  

And I vaccinate my children.

Some of my spare time is spent helping mothers with breastfeeding problems, and this community tends to attract many "natural living" people.  Occasionally I find they assume I don’t vaccinate my own children because I do work in this community.  I don't feel its fair that such assumptions should be made based on the views of a few people on the fringes of some very worthwhile endeavours, like trying to live a healthier life.  To counter these assumptions about me, I'm vocal about the fact that I vaccinate my children. I talk about it on Twitter, I post informative articles on Facebook – and while nobody “likes” my posts or comments, I get personal messages from people thanking me for being brave enough to share what we know is correct. 

             Here in South Africa we have two vaccination schedules – a government one, which is free at state clinics, and a private schedule, which is fairly costly but includes the MMR vaccine rather than just the measles shot.  I chose to use the private schedule.  I know quite a few mothers who use the state schedule and then go to a private clinic for the MMR.  Additionally, I’ve had my children vaccinated for hepatitis A and varicella (chicken pox), which aren’t on either of the schedules.   

For us, here in South Africa, vaccine-preventable diseases are still a threat. When I was a child, there was a boy in my class who had had polio and who wore callipers and used crutches. On the farm I grew up on, one of our employee’s children had had polio.  I can remember friends having measles and my mother keeping us well away from their house.  Here TB is not an abstract threat – we all know someone who has had TB contracted from someone or from drinking unpasteurised milk.   

Unfortunately, if you’re a parent, you’re exposed to so much misinformation and emotional rhetoric about everything from the moment of conception onward that you do always have time to think carefully about the trustworthiness of the information you’re given.  Ironically, the very questions that anti-vaxxers feel one should ask of the medical community are the precise questions they don’t ask of the “natural health” purveyors and anti-vaccine organizations from whom they get their information. 

             What upsets me a lot is that with the relentless misinformation campaign of anti-vaxxers, even the most ardent vaccinator still takes a deep breath before booking the appointment for the MMR.  I know anti-vaxxers claim many other reasons for not vaccinating, but that false autism-MMR connection is the one that gets the most publicity.  Each and every claim made anti-vaccine activists make is so easily debunked – over and over and over—that it is shameful that there are still people who just swallow this information and don’t ask questions. 

             What I do know is that I am doing the best I can to protect my children from preventable diseases.  (I also know that both my son and my daughter will be getting the Gardasil vaccine.) I hope that by sharing this information, I can give courage to other parents who vaccinate to stand up and proudly say that they do, and to counter misinformation when they hear it.  Because vaccination is not a personal choice. 

Kim Norton Jurgens is a mother of two and a Human Resources Manager. She has a degree in business commerce and is married to a journalist. She lives in South Africa.

Editor's Note: Kim shared with us her favorite immunization sites:  "My little arsenal of web sites for sharing reliable information with others includes Anti-Anti-Vax, What's the Harm, QuackWatch, Science-Based Medicine, and Voices for Vaccines."

Moms Who Vax: Crazy Vaccine Lady

By Johanna H.

There is a meme that comes around every so often, one that I think is very easy to relate to. It shows a stick figure thoroughly frustrated at the computer who

is resisting going to bed because "someone is wrong on the Internet." I always chuckle when I see it, because there have definitely been those times in discussions on a wide variety of topics where I've just had to step away and let people "be wrong," if they choose to be. But I still post the Facebook links about vaccine safety, what new vaccines may be on the horizon, even though sometimes it feels like maybe I'm either boring the living daylights out of all the poor people who are friends with "that crazy vaccine lady" or even causing fights but continuing to post regarding a controversial parenting decision. 

But this week a friend quietly told me that her children are now fully vaccinated in large part because of the information she was getting from me, but more

importantly because she simply had a counterweight to the anti-vaccine environment that she is surrounded by. Just having someone in her tribe of moms who fully immunizes helped give her the ability to feel confident in a choice to vaccinate her children. My friend is a loving, strong woman who makes educated and mindful decisions. In this case, all she needed was to see someone else making those same choices, too.

This is why I share on Facebook when the latest study on flu vaccine safety comes out, or when there is an update on how close to eradication we are with polio.

Every share, every bit of advocacy helps to create a culture that is more hopeful, more confident, and more at peace. I am The Crazy Vaccine Lady not because I

am so dazzlingly clever or because I’m just that committed to making sure all the "i"s are dotted and "t"s crossed, or even because somewhere somebody on the

Internet (or in the homeschool co-op) is wrong.

I will wear that Crazy Vaccine Lady badge because parents have a right to be afraid of the right things. And speaking parent to parent, mother to mother, is how

lives can be changed, and even how some lives will be saved: one conversation, one parent, one child, one shot at a time.

Johanna H. is a Catholic work-at-home mom who lives in the Northeast with her husband and six children.

The Subtle Way

Those of you have read this blog for some time probably know that I have contacted the local publication MN Parent before due to what I consider its lax fact-checking and tendency to promote anti-vaccine misinformation. I don't necessarily think this is a line of reasoning that the publishers or even the editor follow, but it appears in the pages of this big-circulation free publication from time to time. When I initially complained about MN Parent's profile of an anti-vaccine mother, in which none of her false assertions were fact-checked or even challenged, I initially received a very gracious response from the editor. However, when the next issue was published, the editorial response to my complaint (and the complaints of others) was to say that they don't fact-check parent quotes and shouldn't be expected to do so. They even went on to challenge CDC information about which state has the most cases of autism (the woman profiled claimed it was Minnesota).

While disappointing, I felt good about speaking up--and even better about the other parents who had apparently written in to complain.

Fast forward to last month. I picked up the November edition of Minnesota Parent and flipped to "20 Questions to Ask When You're Pregnant," written by "personality psychologist" Heidi Smith Luedtke. Number five was a straightforward question: "Should I get immunized?" Below is Luedtke's complete response in the article:

Your physician may recommend shots for the flu, hepatitis b, and tetanus (sic), especially if you're at risk. Live-virus vaccines and those for measles, mumps, and varicella (chicken pox) may be harmful during pregnancy. Speak up to make sure you're safe.

This is all sorts of wrong. First, it doesn't answer the question. Second, I think by "tetanus" the writer means the Tdap, which the ACIP (Advisory Committee on Immunization Practices) just recommended for all pregnant women, due to the increasing outbreaks of pertussis, a disease that is particularly devastating to infants.

But what is most interesting--and wrong--here is perhaps a bit subtle to those not involved in trying to increase immunization rates. Luedtke utilizes a scare tactic not uncommon among anti-vaccine activists: Trying to scare you off vaccines by bringing up totally irrelevant information.

Example: She brings up what I assume is the MMR vaccine (she says "measles, mumps" but leaves off the rubella component of the MMR vaccine, which is ironically the most devastating disease for a pregnant woman and her fetus) and the varicella vaccine. These are two vaccines that are NEVER offered to a pregnant woman. Never.

Here's what would happen. If you didn't know if you had been immunized for MMR, you would have a titers drawn to see if you were immune to rubella (I did this when pregnant). This would reveal your level of immunity. If you were not protected for rubella, your doctor would wait until you had given birth before immunization. As far as varicella goes, a pregnant woman would never be offered this vaccine either.

I'm not sure where the author is going with her comment about the Hep B vaccines--if you were a prostitute or drug user, your doctor might encourage you to get vaccinated, but the average pregnant woman would not need to worry about this.

It's pretty easy to locate the CDC's recommendations for vaccines during pregnancy. It would have been nice if the author of this piece--or better yet, her editor--had simply consulted this document instead of writing an error-ridden collection of nonsense designed to confuse a pregnant woman, at best, or scare her off vaccines, at worst.

As lagniappe, Luedtke directs pregnant women to "speak up to make sure you're safe." I don't know if Luedtke is actually opposed to vaccination, but the image she creates is of a vaccine-mad doctor coming at her with a syringe full of MMR vaccine. If it were me in that doctor's office, though, I'd speak up to make sure both of us--my baby and me--were safe by asking for my flu vaccine and Tdap.

Please speak up when you see members of the media mispeaking on vaccines. Most of the time, these are innocent mistakes (with potentially dangerous consequences) and the editors are glad to have them pointed out. The more often parents hold members of the media to a basic standard of accuracy, the better reporting we will get.

The Rubella Files

Jennifer McDonald is a mother of two, with one on the way, and is a member of the Facebook group “Wear ‘em, Nurse ‘em, and Vax ‘em, too.” She wrote in to share a story from her own family history that underscores her decision to vaccinate her children.

When Jennifer’s grandmother was pregnant with Jennifer’s mother in 1960, she was exposed to—and possibly caught—German measles, or Rubella, one of the most dreaded diseases a pregnant woman can get. At this time, because of the high rate of severe birth defects associated with exposure to Rubella, doctors routinely advised termination of the pregnancy. And this is what Jennifer’s grandmother’s doctor advised her to do.

“He’d seen many mothers regret not terminating once their measles-exposed babies were born, and he’d seen firsthand the effect this had on them,” Jennifer says. In fact, the rubella vaccine was developed in order to prevent transmission of the disease to the fetus, because the effects can be so devastating: miscarriage or stillbirth, an infant with severe heart disorders, blindness, deafness, and other organ disorders.

But Jennifer’s grandmother declined to follow her doctor’s suggestions and proceeded with the pregnancy. “And my mother,” Jennifer says, “was born, presumably defect-free.” So they thought.

Because of the exposure to Rubella when she was a fetus, Jennifer’s mother’s chances of being able to have her own children were very slim. Despite this, and a miscarriage, Jennifer’s mother beat the odds and did give birth to four healthy children, including Jennifer. 

“Looking back,” Jennifer says now, “if things were just a tiny bit different, there's a good chance that I wouldn't be here today.” And while she remains grateful, Jennifer says knowing what she does about rubella, it only heightens her frustration with anti-vax activists who say vaccine-preventable diseases are rare and are not as harmful as we have been lead to believe. 

Rubella remains one of the most dangerous diseases for pregnant woman and their fetuses. It is the reason your ob/gyn or midwife makes certain you have rubella immunity when you come in for your first appointment (a blood test can reveal this if you don’t remember if you were vaccinated as a child). 

When considering the rubella vaccine (part of the MMR vaccine), you need to think not just of your children, but of your grandchildren-to-come. That's because by immunizing your child today, you are preventing the heartbreak of rubella transmission from your child to her own child--your grandchild. 

Note: If you have a story about how vaccine-preventable disease has affected your family, either in the past or recently, please contact us at momswhovax AT gmail.com

If you don't vax for measles, be prepared to help your child through this...

Jim Gehrz via Startribune.com

Editor's Note: Author of the now-defunct Vaccine Times, Leart Shaka, has graciously allowed Moms Who Vax to re-post several of his articles. His work on vaccine education was immensely helpful. The story below is his, sourced from Maura Lerner's excellent Minneapolis Star Tribune article.

Little Mahi is very unlucky: he nearly died of measles. He contracted measles while traveling overseas. He was not vaccinated due to his young age. He was 9 months when his family left for Kenya. Although Mahi’s parents intended to get him vaccinated on time according to the recommended schedule, they didn’t know that although the first shot of the MMR vaccine isn’t given until 12 months, for overseas travelers different rules apply. Mahi should have been given a vaccine prior to his trip to Kenya. His chances of getting the disease would have been slashed by over 90% if that had happened.

Little Mahi is very lucky: he nearly died of measles, but he didn’t; he beat the disease. After contracting measles he had a 1/20 chance of getting pneumonia, which he unfortunately did. On August 10, his mother brought him to the emergency room with very high fever. Within days, baby Mahi was on life support, hanging by a thread.

“I didn’t think I’d be able to hold him again,” his mother said Friday, as she cuddled him in her lap.

[...]

On his fifth day in the hospital, Mahi took a dangerous turn. He was transferred to intensive care, hooked up to a breathing machine and given antibiotics to battle the pneumonia. For days, he was sedated and barely moved.

“It was really hard,” said his mother. “It was like watching a dead body.”

The medical experts were equally worried. Mahi, said Stinchfield, was “teetering near death.”

After nearly two weeks in intensive care, Mahi started to wake up, as doctors eased up on the sedation.

On Tuesday, they took off his breathing tube. “He opened his eyes and looked at me,” said his mother, and he squeezed her hand. “Look at this!” she thought. “I couldn’t believe he could be that strong.” When he started crying when she stepped away, she was thrilled. “Wow, my son knows me,” she said.

Little Mahi is lucky to have beaten measles, unfortunately 1-2/1,000 children who contract the disease will not be so lucky, despite the best medical care they can be given. Measles is not a trivial disease. It can land you in the hospital like it did baby Mahi, it can leave a child deaf, and it can kill. Do not be swayed by the conspiracy theorists. Do not delay.

Inject to protect.


Editor's Comment: Mahi was not vaccinated because he had not yet reached the 12-15 months of age recommended for the MMR shot (though he should have been vaccinated before traveling overseas). But what happened to him can happen to any unvaccinated child. Delaying a vaccine out of fear or because of recommendations from a vaccine-hesitant parent-friend puts your child at grave risk for those months that she is left unprotected, especially now that measles has come roaring back to life all over the country because people are not vaccinating their children. My kids have received two MMR vaccines. My eighteen-month-old had to receive her MMR booster (typically scheduled for four-years-old) just six months after her first one because of the Minnesota measles outbreak this winter. It's not the time interval that bothers me--it doesn't bother me at all. What bothers me is that anti-vax parents forced me in to the doctor's office for a shot two-and-a-half years early. 

Moms Who Vax Newsletter, #1

Parent-to-Parent

We have discovered that, at least in Minnesota, the public health authorities and medical establishment is starting to pick up on the fact that parent-to-parent communication is an effective tool for increasing immunization rates. I recently participated in a panel discussion in front of local media to mark National Infant Immunization Week. On that panel were three eminent pediatricians (including the Head of Pediatrics at the Mayo Clinic), as well as noted public health authorities, me, and the amazing Shannon Duffy, whose daughter died of a vaccine-preventable disease, and not because she was choosing not to vaccine. Take a look at the link for her story. Shannon's story is so profoundly moving and devastating, and it is an effective way to get the message across to new and expecting parents.

After that media event, I stood with these brilliant doctors and talked about vaccine-resistance. They said all the right things, talked about explaining the lack of a link between vaccines and autism, about continuing to press the message in appointment after appointment, but at a certain point, I said: "You know what would have helped make the decision easier for me? If the word 'death' had been used in my discussions with my pediatrician. She allowed me to delay my son's MMR (by 3 months) without fighting me on it at all. Telling me that measles can cause death would have kept me up at night." The doctors looked at one another, but Shannon nodded vigorously. Doctors have become afraid of using the D word, even when warranted. We are warned time and time again of the risk of death from anesthesia, rare as it is. Why do we not hear this, even in passing, in the pediatrician's office? Is it too harsh? I got the feeling from the doctors that it was. But it's all in the delivery, I reminded them. You don't get the James Mason God-voice and boom "Death!" You say, gently, that you are ethically obligated to let them know that the risk of not vaccinating includes serious disability or death. 'Nuff said.

Patient Liaisons

Since the NIIW panel, the Minnesota Department of Health has asked me to be part of two more panels, including one on vaccine resistance. I also noticed that at my son's pediatrician's office, they are looking for volunteers to act as liaisons between the medical community and parents, not just for vaccine issues, but including them. I plan on volunteering for this and would urge anyone in the Twin Cities to volunteer as well. If you don't live in Minnesota, consider offering this service to your pediatrician. It's a given these days that nearly every practice will have some unvaccinated children. It is in our children's best interest to get these kids vaccinated, because an infant in the waiting room is incredibly vulnerable to a sick unvaccinated child. Whooping cough and measles have both recently been spread in this manner. Consider approaching your pediatrician with a proposal to run a few casual gatherings with new parents. Have a doctor present, of course, but as a parent, your experience has much more weight in so many cases (as sad as this is). 

Law Changes

In Minnesota, we are looking to close the loophole that allows conscientious objectors to vaccines to face no obstacles in getting their children admitted to school. We do not know where to begin. If any of the Moms (or Dads) who vax out there have advice, connections, pointers, etc., for us, we'd be grateful. We are targeting our state legislature, and think we may have a representative who will present the bill, if we can only get this thing started. Several of our Minnesota Moms Who Vax feel the anti-vax movement in Minnesota is ramping up again. There is even a new "political party" based on vaccine rejectionism, called the Canary Party. We are looking for advice from knowledgeable folks about how to build this grassroots movement of vaccinating parents, to help vaccinating parents to shake off the complacency and become more active in this fight. Please e-mail us at momswhovax@gmail.com if you have any tips or would like to help.

Success Story

Finally, I just wanted to share this heartening story from our Mom Who Vaxs, Carly. Her cousin comes from a family of non-vaccinators; their father is a chiropractor who has taught his kids that vaccines cause all sorts of horrible things. This person's sister is not vaccinating her new baby because "a friend of mine's child developed Down's Syndrome after being vaccinated." Knowing this as background, Carly's story may brighten your day.

Hi ladies,

I had to share a small piece of good news on the immunization front. My cousin John's baby arrived a few days ago. I went to visit them yesterday at the hospital, and they ARE vaccinating the baby! Their son got the Hep A vaccine at the hospital. John said he spoke to a pediatrician that was willing to sit down and explain everything to him, which he appreciated, and his wife is vaccinated herself and in favor of it. John is also getting himself vaccinated and the doctor started him out with the whooping cough vaccine.

So in this case, a pediatrician taking a hard line and refusing to discuss the immunizations would have turned my cousin off. The soft approach worked better in reaching this "middle of the road" parent.

Hope you both and your kids are well!

Carly