Sometimes, parents have to fight like tigers to advocate for their kids. I think we’ve all had unfortunate run-ins with healthcare professionals who have the bedside manner of a prickly pin cushion, are incapable of digging the wax out of their ears, and spend all but five minutes to review your history and chuck a diagnosis at you before heading on to the next patient. Yeah, we’ve all been there and it’s infuriating. Thankfully in this day and age, so much information is available on the internet that, at least in some measure, we patients have become the first line in defense in healthcare. Of course, the patient was always the first line, but now we have the opportunity to be better informed thanks to search engines like Google.
However, this is only the first step in the journey. Yes, run-ins with less-than-helpful healthcare professionals have left our culture with a sour taste in its mouth when it comes to trusting medicine and science. On the other hand, most of us are not doctors. And even though Jenny McCarthy seems to have utmost faith in her informal education at The University of Google, I wouldn’t trust my judgment enough to by-pass professional advice altogether. I’ve experienced enough occasions in my life when I thought I knew the cause of an acute illness– I mean, hey, I’m a biologist after all, right? But later I find out I’m completely wrong. And the only reason that the doctors could figure it out was because they have experience in medicine and I simply do not. They have been educated to (hopefully) recognize the signs. I, instead, have been educated to understand anatomy, how cells grow and mature, and how they interact with one another. That isn’t medicine. Which is why I leave the official diagnoses to the people with the training from now on.
I’m no architect. I would never attempt to design a house because I have zero training in architecture. But in our culture, because we all have access to scientific materials online, because we’ve all had to let our fingers do the walking to help ourselves whenever a given medical professional has let us down, and because that’s invariably led to some distrust between patient and doctor, there’s a cultural sentiment where we kinda feel we’re all doctors and scientists. That feeling is understandable considering what we go through. But the sentiment can become grossly over-inflated, as Jenny McCarthy’s “University of Google” comment on Oprah illustrates.
It is potentially dangerous for laypeople to play doctor or scientist with themselves or their kids without a considerable sense of caution. (Hell, sometimes it’s dangerous enough for doctors to play doctors!) But if you haven’t studied the development of the brain in depth, I promise you, you will not truly understand autism at the biological level, and to theorize without that knowledge is foolhardy. That goes for anyone, regardless of whether you think autism is caused by genetics, epigenetics, leaky gut, vaccines, or something else entirely. It doesn’t matter. If the brain is involved, you need to have studied the brain. That includes embryology and developmental biology, cell and molecular biology, genetics, the cardiovascular system, the immune system, everything. If you don’t have that broad base in biology, your understanding will be limited.
In this day and age, sometimes we need to play doctor or scientist in order to try and successfully advocate for ourselves or our families when we feel that needs aren’t being met. But we seriously need to acknowledge our limitations too. Many times, that limitation is simply knowledge. If we haven’t been trained in a particular area of study, we are invariably limited and we will make many more mistakes. Do you want to make those mistakes with yourself or your child? I know I don’t.
Here’s some advice which I hope you might find helpful: If you want to be a good lay-scientist, be open to ideas with the realization that there’s still a lot you don’t know (and that goes for professional scientists as well!). When you can, read professional materials, including textbooks that give a broad overview of an area of study, and if you can’t access articles don’t be afraid to email one of the authors and ask if they can send it you. If you are too overwhelmed by the technical jargon of a paper, then read the Abstract, Introduction, and Conclusions sections, which will better summarize the findings in general terms. In addition, don’t use Google or Yahoo but use search engines like Google Scholar and PubMed, which are great for finding peer-reviewed work and bypasses less reliable materials. And don’t be afraid to open up conversation with scientists whose work you want to learn more about. Yes, some of them may be busy and ignore you, but others are often eager to explain. Finally, the biggest mistake that lay-scientists often make is taking evidence of a single paper at face value. Not that individual papers can’t be useful, but rely instead on the bulk of evidence to form your conclusions. That is the strength of science: its entirety.
As a scientist, it genuinely concerns me when people, who have little to no background in biology or medicine, are so convinced of a hypothesis or treatment that they are willing to fight tooth and nail to convince everyone of it. Such conviction is not admirable but dangerous. At that point, the motivation becomes less about “accuracy” and more about being “right”, a human failing we all succumb to at one time or another and which blinds our judgment. Mind you, I say this irrespective of whether the hypothesis or theory actually is correct. But, ultimately, every concept needs to be weighed cautiously and rationally, especially where health is concerned. First and foremost, our aim must be to improve quality of life, because that’s the only way we truly win.
Know thy limitations.
Science Over a Cuppa 
Dear Emily,
I got into the habit of reading your posts aloud, as an exercise to speak my English better. Generally I applaud in myself your ability to express a formally excellent and most understandable language. Oh, over time I need to stop to search a word pronounce or meaning on thefreedictionary. My motto is: “My ignorance has very few bugs”. J
As a MD, and seen the complexity of the subject, this time I applaud you twice, especially for the sentence: “That is the strength of science: its entirety.”
Thank you.
Yours,
Stefano
That’s great, Stefano. I’m glad my writings can serve you a double purpose! I truly need to learn other languages. But, alas, I’m currently relegated to English.
And I’m glad you like the phrase about science. It’s so very true and even for scientists, it’s all too easy to forget. I often need to remind myself!
Some folks use the University of Google to access scientifically based articles. I know that those are available elsewhere. Google makes it easy to start making tracks. Sometimes I wonder if science would have made much progress without the inspiration of anecdotal reports. I also find that some of my best inspirations for treatment in applied psychology come from way out of the box thinking that has some link to science. For example, I once treated a patient with a paper airplane.
Oh, I agree whole heartedly about the usefulness of Google. Which is why I preference using Google Scholar over an engine like PubMed. Google Scholar is best for relevance and ease of search; PubMed is better for getting you rapidly in touch with the most recent research.
Also, I don’t decry anecdote. It’s a vital part of many sciences and is at its foundation, i.e., the observation of natural phenomena. However, as humans with our tendency to use a few snippets of information (e.g., anecdote) to generalize, we run the risk of being incorrect much more frequently if we rely primarily on these anecdotes. Like I said, the strength of science is in its entirety, including anecdotes but also including more formal experimentation.
In terms of Applied Psychology, I can totally see how it’s not just a science, but it is also an art form, the latter which is really difficult to “box in” as you say without ruining the approach. My mother’s a retired psychologist and my bachelors is actually in Psych; I’ve been around therapy and therapists my whole life, so I do understand what you mean when you say that treatment approaches often require a level of off-the-cuff thinking and creativity.
I personally don’t find those approaches in juxtaposition with science– although perhaps juxtaposed to prevailing schools of thought amongst sects of scientists (who sometimes, in my opinion, can be quite boring 😉 ). I, however, am not one of them.
Great article.
As a multi degree seeking, part time Google Scholar with a focus on being A Jerk On The Internet I have come to the conclusion that acknowledging the depths of our collective ignorance and the incremental nature gaining information about our world through experimentation are two important lessons to take to heart. The rules I have found to be helpful are to see how broadly a vein of result has been replicated; if a similar question has been asked and reached broadly similar results, there is likely something at play. The biggest problem for an armchair scientist like myself is not knowing if something should have been spun for twenty minutes in a centrifuge instead of ten. Methodological differences will always be a realm of mystery the Google student.
The problem of failing to seek, or ignoring mainstream medical advice is especially thorny when for many people, there is no advice to be given and you are simultaneously facing a situation wherein the status quo is unacceptable.
If is appropriate to say that with a lot of “treatment’s” on Google Web are shall we say, incomplete or even completely lacking in regards to a risk/reward ratio. The flip side to this, however, is contextualization of the risk of an existing situation continuing unabated; that side is frequently not acknowledged in online discussions, but it does weigh heavily on the minds of some of those that take to Google to find treatment.
When my son was an eighteen month old toddler, he started banging his forehead into walls, floors, windows, railings and anything else. Thirty of forty times a day. Sometimes he’d take a running start. For months he carried with him a half dollar size bruise smack in the middle of his forehead. At this time, he’d been flagged as a very high risk for autism by our local CARD center. Our mainstream doctor, who is a nice guy and knows his way around the script to antibiotics simply did not have any advice for us. My son wasn’t speaking, wasn’t signing, and did not appear to understand language receptively; we really had no mechanism by which to understand *why* he was hurting himself. Our only “mechanism” for trying to deal with this was to be within arms reach of a toddler 24/7. That’s not much of a solution, though it what was what we had available for about six months. We were tired folk.
I took to the Google U. I dragged my wife and son to a DAN doctor. In the waiting room, my son had a bowel movement and the Dr. told us, “whew, that kid has a yeast infection”. When we met, she told us that she wanted to give us an anti fungal treatment. She told us that my son would be a *very* unhappy camper for a few days, the ‘die off’.
It didn’t make a lot of sense to us. Our mainstream pediatrician hadn’t said anything about yeast, though we had asked him about my son’s chronic, four times a day loose stools. The internet had a lot of anecdotal evidence about diet and GI, but really very little in terms of actual papers. (this was ~ 2005). But it really didn’t matter; the cost of doing *nothing* was too much for us. Others may have different capacities to deal with this kind of thing, but we were spent.
We wound up giving my son the anti fungal. He went insane for two days. But he then stopped banging his head; within a week of Nystatin starting, he was hurting himself less than twice a day. Within two weeks, we had our two consecutive days when he *did not* hurt himself. Within a month, we stopped seeing him self injure for good.
Thank God. Whatever happened, it saved his life, it saved our lives. I cannot rule out the possibility that we observed a coincidence, but i can very strongly doubt it.
Since that time, there have been some papers on increased GI disturbances in the autism population, but really nothing about fungal overgrowth. Maybe it hasn’t bubbled up to researchers, or maybe there are a raft of negative papers that people never bothered to submit. Google Scholar and pubmed have nothing to say about what we observed.
I haven’t tried to convince other people to try this route per se, but I have shared this story with other people whose children were similar to my son. I don’t know if that makes me a bad actor or not, but I do know that a lot of the commentary about people seeking alternative treatments for their child lacks the necessary context to draw the accusations being hurled. This article doesn’t fit that mold, but just as it is important to understand the limitations of our knowledge of biology (and what a lot of limitations we all share there), our understanding of choices being made can be similarly narrow.
That’s a great story, passionless. And I personally would be extremely interested in seeing more research done in future that could potentially offer some sort of mechanism of action to the reaction you saw in your son following antifungal treatment. I agree entirely that, sadly, there are certain areas of what seem like very necessary areas of research that go untouched by professional scientists. Part of that is probably due to a “bad reputation” some topics may’ve gotten. For instance, if anything potentially useful becomes popular in alternative medicine circles, it seems to get a “don’t touch me with a 10 foot scientific pole” sign slapped onto it and many scientists may view it with additional skepticism than usual. In addition, there may be scientists who do want to study such phenomena but then funding agencies refuse to support it, and without $$$, no research happens. Perhaps it’s considered too risky a venture or perhaps, because of that “don’t touch me” sign it has on it, they’re just not interested. In any case, sometimes pseudoscience gets popularly applied with little substantiating evidence, but then there’s some topics which are prematurely labeled pseudoscience. In the latter case, scientists would have to work twice as hard to convince the community of its veracity. Sad, but that’s the human brain.
Re: the issue of understanding methodology, I get you. It’s even a problem for scientists whom are not familiar with applying the methodologies that they’re actually reading about. And really the only thing to remedy that is to keep reading. Eventually, one gets a vague sense of which approaches are more popular and, therefore, perhaps a bit more reliable. But it’s a problem even for me. All you can do is keep that little reminder in the back of your mind that, “Even though the results look promising and make sense, there could be flaws in the methodology that have falsely created what I’m reading about.” In such instances, it can also be useful to look at the p-value, which is often used as a measure of statistical significance. Here’s the rule of thumb I use for myself: When a p-value falls between 0.01-0.05, even though it’s considered “significant”, I need to remain skeptical that the result could be due to chance or flawed methodology. If the p-value falls below 0.01, that’s MUCH more assuring, and if it falls below 0.0001, then it’s fairly safe to say that the results are probably real. That doesn’t mean methods still couldn’t be flawed, but it’s perhaps a little less likely. So look for those p-values as additional pointers while reading. 🙂
I should also say that “real results” don’t necessarily mean that the authors have interpreted them correctly. Data usually doesn’t lie, but humans will always be biased. It’s impossible to avoid.
What do you think about patients who use the internet to obtain a diagnosis of a very new or very rare disease,that no doctor would look for in the first place?I was diagnosed with autism as child back in the dark ages of the early 1970s.My diagnosis was a little less severe than classic Autistic Disorder,because I was not intellectually disabled.The suggestion was I be institutionalized.My mother would not allow this,and I ended up living with my mother until she died in 2012.
I also had many serious and unexplained medical problems,and repeated regressions that lasted into my 40s.I was born blind in one eye.I have GI disease,heart problems,seizures,problems with muscle development,a secondary immune deficiency what I later learned was severe megaloblastic anemia,and a polyneuropathy.Onset for all was complete by the age of twelve.I spent too many years with no diagnosis other than autism.I was told every medical problem,acute seizure,or episode of heart failure was just a part of autism.Five years ago,I lucked out on a doctor that was willing to do some tests,that showed serious genetic and metabolic problems with folate and B12.This started me looking on the web.I began to read everything I could about folate and B12 metabolism in autism.I also began showing my doctor articles from journals,and suggesting tests.90% of the time I was right on the money.This led to a diagnosis of cerebral folate deficiency in 2012,and more recently a newly identified Complex IV mitochondrial disease,that only shows up in autism with folate and B12 metabolism problems.
I have been treating my CFD since 2009.Since I started as an adult,it took 3 1/2 years for my autism to go away.I still have many of my medical problems,though.I have been going through a bad spell of mitochondrial sickness the last several weeks,but since I have treated the folate and B12 metabolism,there has been no regressions.
Had I listened to the doctors who only wanted to give me SSRIs,I would still be seriously autistic,with no medical diagnosis,and stuck in a group home,or worse.
Sometimes those hoofbeats are a herd of Hirola.
Hi, Roger, thanks very much for sharing your story. I’m sincerely glad (and impressed!) that you’ve been able to research and advocate so well for yourself. I have no criticisms but only support for people doing exactly what you have done for yourself. And, yes, I’ve run across a lot of doctors who are disinclined or even unwilling to treat the patient like a collaborator in the treatment process rather than a subordinate. Sometimes, at that point, you do have to fight to advocate for yourself, even if it means switching doctors until you find one who won’t sweep your concerns under the proverbial carpet but deals with them head on.
I think it’s good, it’s necessary that people seek out information for themselves. I think it makes them better patients– maybe less submissive, but better patients.
As a tangent, is it possible to get a higher definition/quality image of the Google University of Medicine diploma? I’d like to print it and frame it for my cube…
This was where I borrowed it from. Not sure if that’s going to provide good enough resolution to print, but certainly give it a try!
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