A Tale of Vaccines and Studies: Guillain-Barre Syndrome, Databases, and Verbosity, Oh My!

I'm wordy, no surprise. In trying to respond to Wednesday's comments to my two posts, I did my typical exercise in verbosity, and it wouldn't fit as a comment. I figured why break it up when I could post it here?

You know, sometimes science lags way behind what we want to know, and certainly what we want to do about diseases and people suffering. It's frustrating. And then, even when a lot of research has been done, we still don't always have clear answers and the information gained is so dense, it's doubly frustrating. Some things are incredibly complex and beyond a layperson's ability to parse.

So much of it is just beyond our pay grade, you know? Doctors spend so many years studying and even then know so little compared to what needs to be known. People like Mercola and Mike Adams, and other pseudoscientific charlatans come along with answers, hard solid answers (except they're not), and the pull to believe them, to believe the people who assert things with absolute conviction is overpowering at times.

A lot of sites have engaged in the dissemination of inaccurate, misleading information regarding vaccines and adverse effects, and what are people supposed to do? It's hard to know who to listen to, who to trust, who to believe. And there are studies in psychology (Daniel Gilbert) that show if we take in information we automatically believe it; it takes conscious, deliberate evaluation to consider information and choose to reject it. So often we take it in, absorb it, accept it and don't even notice.

There has certainly been a lot of discussion about Guillain-Barré syndrome and the swine flu vaccine of 1976. The CDC notes "In the United States, for example, an estimated 3,000 to 6,000 people develop GBS each year on average, whether or not they received a vaccination." The fact sheet continues, "GBS is rare. Medical events occur regardless of vaccination, and background rates are used to assess vaccine safety by comparing the expected rate of disease or death to the actual or observed rate in any given timeframe. The background rate for GBS in the U.S. is about 80 to 160 cases of GBS each week, regardless of vaccination." The link is well worth your time to read if you haven't already read it. I think it's important to carefully, deliberately, intentionally read the collection of articles regarding vaccination that the CDC provides. It' a lot of information, but it's a necessary primer.

Actually, while the studies on the 1976 swine flu vaccines did show an excess of "cases attributed to the vaccine...estimated at 532 (some sources say half of that number), and most of them recovered fully. 25 deaths were attributed to the vaccine," it' not as clear cut as it's been hyped by certain vaccine-fearing sites. Nor is it anywhere near the danger they've made it out to be.

Novella writes, "GBS is an autoimmune neurological disorder. It is a monophasic (one time process that gets worse then gets better) post-infectious illness. Essentially, an infection with a virus or bacteria triggers the immune system to have a second inflammatory response against myelin proteins."

Novella continues, "GBS can not only be triggered by the flu or other infections, but also by vaccines used to prevent infections. This is because vaccines are designed to stimulate the immune system, to provoke an immune response – which is what causes GBS. The risk of getting GBS from the flu vaccine is about 1 in a million. This is very reliable data, as we have been using the same basic technology for the flu vaccine for decades and we have reliable statistics on GBS as treatment requires hospitalization. Some cases may be missed if they are very mild (probably rare, but also if a case is too mild to be recognized then who cares) or from misdiagnosis (also probably rare as it is fairly easy to eventually confirm the diagnosis even if it may be difficult initially)."

A one in a million chance. One in a million. One in a million.

Van Dourn notes that "The incidence of GBS in the USA remained stable over the period 2000–2004 (1.6–1.8/100,000)." So the chances of contracting GBS are around 2 in 100,000 but the chances of contracting GBS after vaccination are 1 in a million. Despite how rare the syndrome is, research continues. In 2009, van Dourn reports the following research advances: "Research on Campylobacter genes, single nucleotide polymorphisms in GBS patients, anti-ganglioside antibodies, animal models, the role of complement, and prognostic modeling for patients with GBS made clear steps forward. Progression on improved treatment in GBS patients lags behind. In the next year, it is hoped that a study of a second IVIg dose in severely ill GBS patients with poor prognosis based upon the EGOS and a pilot study on the effect of complement inhibitors in GBS will both begin."

In looking at other articles on various vaccines and GBS, I found an article by Tuttle et al. which "failed to demonstrate an enhanced risk of Guillain-Barre syndrome within 6 weeks following administration of tetanus-toxoid-containing vaccine." Tuttle et al. continue in a later paragraph, "The only prior well-demonstrated association between Guillain-Barre syndrome and vaccination was that shown with swine influenza vaccine in 1976 with a relative risk of approximately 8 for onset of Guillain-Barre syndrome within 6 weeks of vaccination and an attributable risk of slightly less than 1 case per 100 000 vaccinations."

Despite what is already known, research continues. In the US, there is currently one study dealing with Guillain-Barre and vaccinations despite the 1 in a million number. For just Guillain-Barre Syndrome, looking through Academic Search Complete, Health Source: Nursing/Academic Edition, and MEDLINE, there are 7,580 journal articles. When I look at what the university database has full text, there are 1,456 full text journal articles on this one rare syndrome. When I add vaccination to this search, I can access four full-text articles, but when I expand it out, there are 51 journal articles in those three databases. There are currently 968 studies ongoing in the US for adverse events and vaccines. There are currently 109 ongoing studies for genetic disorders and vaccines. Add adverse to that search and there are 21.

Obviously, GBS, despite its rarity, attracts research, and this is a good thing.

So the question becomes when do we inflate risks out of proportion? GBS is 1 in a million from vaccination and has been and is being researched. Other questions become where do we get our information, how do we evaluate its worthiness, what do we do with that information?

It's impossible to know about all the research currently being done, even in one area. Sure, a little time, some insomnia, and a predilection for perseveration and collecting information come in handy, but I have doubtless barely touched on what is available out there on just GBS. I admittedly remain woefully ignorant on much about it and despite my best attempts will never get through all the articles available in the limited database collection at my local university.

It's so important to remember that the amount of data being collected is enormous and just because we haven't heard about something on a blog or on the news or in a group doesn't mean scientists aren't looking into it somewhere. The US is just one nation; there are scientists in other nations looking into similar research questions. No one person can keep up on all the information accruing, even in a small discipline. It is truly exponential.

We cannot presume simply because we are unaware of something that it doesn't exist and it is incredibly dangerous to decide we are well-informed on subjects because we've touched upon them briefly.

The more I learn, the more humbled I am by why I do not know and will never know.


Tuttle, J., Chen, R., Rantala, H., Cherry, J., Rhodes, P., & Hadler, S. (1997). The Risk of Guillain-Barré Syndrome after Tetanus-Toxoid-Containing Vaccines in Adults and Children in the United States. American Journal of Public Health, 87(12), 2045-2048. Retrieved from Academic Search Complete database.

van Doorn, P. (2009). What's new in Guillain-Barré syndrome in 2007-2008?. Journal Of The Peripheral Nervous System: JPNS, 14(2), 72-74. Retrieved from MEDLINE database.

Reading recommendations:

CDC. If you want to understand these diseases and vaccines in an elementary form, this is the place to go. It's a good start. It's pretty big, too, so it's going to take some time. 

Science-Based Medicine is an excellent resource, and one I often consult first so that I know where better to search in the databases. I've learned a lot there, mostly how much I don't know.

The Institute of Medicine is a must. An absolute must. And most of it is free! (haven't come across anything I've had to pay to read yet)

And don't forget that Paul Offit writes some pretty good books on vaccines. He is, after all, an expert in the field, and I trust him and his work. They're accessible books.

ClinicalTrials.gov will let you search for current clinical trials in the US. Pretty damn cool.


Autism Mom Rising said...

Thank you. I'm glad to know there are studies looking into genetics and vaccine injury. That is all I ask. In 1920 it may have been understandable to accept a risk to some to protect the many, but in 2010 the public has right to expect research into indentifying risks before the fact.

kathleen said...

Kim-Well done. Thanks for all the info.Yes-there is so much research being done..and not enough time to find it all...thousands upon thousands of studies. The links you provided are excellent..Taking the time to actually READ them..theres the rub. It isn't always easy to read..and much of the time not having a scientific background makes it even harder. Mercola and Adams make it easy..If people just took the time to research the sources they cite-well, that alone ought to give them pause-but they don't. It is easier to buy a tanning bed..or drink raw milk..or take some homeopathic water and herb mix than to read and research a study.

farmwifetwo said...

GBS isn't all that rare, Dh's cousin-in-law came down with it a few year ago and was unable to work for a year. A young man barely into his 30's.

GBS tends to be triggered by the influenza. Although, they claim otherwise, some do contract it via the shot. My cousin's a nurse and annually, her dose of the "flu" corresponds with her annual vaccine. So, yes, one may trigger the other.

Saying that... I've had one family Dr, and 2 Ped's (first retired) tell me there is no need for the influenza vaccine if you are healthy. My kids had H1N1 in May, before the vaccine came out in the fall. They stayed home. Another time they got the "flu" in October and after a week both had ear infections - the only one's they've ever had - and received antibiotics for them, a week after they contracted the "flu".

We've had those "shots" we wish to have. We've caught the chicken pox, and we've had the meningitus one - too far from a major medical ctre. I do snigger when they tell us that people of "my generation" need another mumps shot "it may return"... no kidding... but I was 9 at the time when it did... had a miserable Xmas holiday that year... they're 30yrs later with that idea.

KWombles said...

You're welcome, Suzanne.

Thanks, Kathleen. It really is humbling to look at any given subject and realize how many people around the world are looking into. The amount of research is staggering. There's just no way to keep up with it all. That can be daunting, and it's impossible for the media to keep up with it (and we already know how badly they butcher it). It's a good thing that there are various institutions and organizations like the Institute of Medicine collating information and providing reports for the public.

FW2, I'm always happy to see you visit. It can be really hard to weigh what we see, what we can recall readily against dry statistics, can't it? And our tendencies to diagnose things in ourselves, well, we all do that, don't we? How many times have we all heard someone lament that they caught the dreaded stomach flu, never mind that the flu is restricted to influenza, not a stomach virus? And far too often, folks will insist they've had the flu but not have been swabbed to confirm it's influenza.

The public co-opts medical terminology all the time, uses it imprecisely and inaccurately. It's easy, it's a short-hand, and it's all too often entirely inaccurate. Not to beat a dead horse, but it's like that whole adrenal fatigue thing or the tendency for individuals to insist they have food allergies when they have food intolerances. :-)

Roger Kulp said...

Why fear of vaccination is spelling disaster in the developing world

KWombles said...

Thanks for the link, Roger. I appreciate it. :-)