On coincidence and curiosity

Coincidences can be too convenient. 

A teenager gets a vaccine and experiences symptoms of lightheadedness, flushed skin, and tingling in the upper extremities. Examination in a pediatric practice confirms an elevated heart rate, a rash around the vaccine site, and altered sensation in the back of both arms. After three days, those symptoms disappear, only to suddenly return two weeks later, with increased severity. The evening prior to the symptoms’ re-emergence, the teen notices a tender bump beneath the skin at the vaccination site. An ultrasound later confirms the existence of a subcutaneous nodule, a 2 by 2 cm cyst-like swelling that is felt to represent a nonspecific inflammatory reaction, not an active infection.

The teen and her family pose an obvious question. Could the symptoms, the nodule, and the vaccine all be related?

Experts issue a sober reply: the concurrence of vaccination and unusual symptoms is coincidence. The vaccine in question does not cause these symptoms.

“They’re sure?” the teen asks.

The temporal association seems hard to ignore. And yet that is precisely what happens. Dogma casts a critical countenance on the possibility of a vaccine-related problem. Proponents of the vaccine and its large scale epidemiological evidence repeatedly reply “coincidence” with an air of authority and finality.

Over a few weeks, the nodule subsides. Unfortunately, the teen’s symptoms and physical exam changes do not. Autonomic nervous system dysfunction – likely immune system caused – is diagnosed by a thoughtful specialist who cares for children with similar symptoms at a major medical center. Medications are tried, as are intravenous infusions of fluids. Tests are run. Her life upended, the teen struggles through eighteen months of unsuccessful treatment trials. Finally, an intensive neurovascular retraining program at a large children’s hospital successfully knocks the “dysautonomia” into remission.

“Strange”, the affected teenager observes during the course of the illness. “No one really wants to talk about what caused all this.”

Disappointing, more like it. The medical profession is losing its sense of curiosity.

I get it: the vaccine topic polarizes. There is a deepening entrenchment between those who support vaccines and those who oppose them. The battle lines are being starkly drawn. There seems little room for rational reflection.

There is no doubt that immunizations have improved the world. Diseases that once killed or permanently disabled have either been eliminated or beaten back to the brink of elimination. The science is sound behind the vaccines. Their public health results have been astounding.

And it is a terrible truth that society is becoming complacent. Worried about potential side effects, the average person is susceptible to misinformation, both in the medical literature (where evidence has been falsified) and in the lay media. Consequently, fewer children are being vaccinated. And some preventable diseases, such as measles, are returning.

But what does medicine do? Instead of engaging in a compassionate conversation, it labels people (mostly parents) who worry that vaccines may cause problems: “anti-vaxers”. The profession expounds the virtues of vaccines and the science of large scale studies. It closes its ears to any dissent.

I was born under the sign of polio. My father contracted the dreaded virus in the late 1950s, when my mother was pregnant with her second son (me). Dad had tried to get vaccinated – three times – but failed because the local medical offices in Philadelphia had run out of vaccine. He spent the remainder of his life in a wheelchair. With this perspective, I don’t need any self-righteous researcher to tell me about the virtues of vaccination. Most of these people haven’t lived personally with the consequences of missed immunization. My family has.

Despite that experience, I am not naive enough to believe that all vaccines are risk-free. We know they are not. We also know that the public health benefit of vaccines outweighs the individual health risk of some uncommon side effects. Until the rise of autism set anxiety into the hearts and minds of American parents, most Americans were willing to live with this risk-benefit relationship. They remembered polio. They had seen children die from measles. Now, those memories are fading. And recently, the individual willingness to accept risk has changed. Sadly, the flames of parental fear are being fed by inaccuracies and falsehoods.

But that doesn’t make the fear wrong. And it doesn’t mean that medicine and its scientists should be closed to adding to our collective knowledge base. In an age of so-called precision medicine, we should listen better to the perspective of the individual.

Look, I understand that just because events happen at the same time they are not necessarily related. If you review the peer-reviewed medical literature, you will not find a statistically significant difference in rates of dysautonomia between populations receiving and those not receiving the vaccine. Large scale studies show that the rates are similar. If you scour the literature, there is also no evidence that a vaccine, a subcutaneous nodule in the arm, and a condition called “immune-mediated dysautonomia” are connected. But – and this is the significant part – there is no report on this particular triad of concurrence. It has not been studied.

Neither have there been examinations of sub-population data comparing rates of dysautonomia post-vaccination between adolescents (such as my daughter) with juvenile arthritis who are receiving weekly injections of an alpha tumor necrosis factor antagonist and adolescents without such a clinical history. And, because of our collective close-mindedness to inquiry about vaccination effects to subgroups of people, you won’t find my daughter’s recent experience or other similar case reports published for the general medical community to consider.

The course of human discovery has benefitted from inquisitiveness. Examples abound of the unexpected, experience outside the confines of previous evidence, leading to new lines of thinking and investigation, and subsequently, new theories, new explanations, and new therapies. This does not happen randomly. It happens because people in positions of observational power permit themselves to pause when something seems different, to challenge themselves and existing frameworks of understanding when something seems unusual, and to ask questions.

My daughter did just that. When she was told that the vaccine in question did not cause the reaction she was experiencing in her arm and body, she calmly rested a finger on the swelling in her arm and asked “then what caused this?”

We don’t know that the vaccine did or did not cause the arm nodule and the rest of the symptoms. We only know this: there are no data, there is no “n”, there are no reported cases of delayed inflammatory response the size of an avocado pip at a vaccine injection site occurring simultaneous to the onset of dizziness, lightheadedness, and inappropriate tachycardia. The field is open.

Shouldn’t the tender inflammatory nodule at the site of the immunization have made us curious? It did not, to many of my medical colleagues. A shadow drew over most expert faces when the temporal association was mentioned. Behind that shadow, minds compartmentalized.

To the person directly experiencing all this – my daughter – this was not some academic exercise, some theoretical construct regarding the correlation or lack thereof between her experience and an existing evidence base. This was about feeling better. This was about helping other young people with similar medical histories avoid the same situation. This was about trusting that medicine could see past existing dogma and potentially see something new. The nodule in her arm caused minimal physical discomfort. The cool and systematic decision to ignore it incubated a feeling of isolation and intermittent hopelessness. Medicine’s blind defense of vaccination safety brought little solace. And so the nodule – and its unique circumstances – gradually receded into untestable oblivion.

We missed an opportunity for learning. The vaccine is good; I believe that most young people should still receive it. Is it possible though that a subset of children and young adults with certain immune-related medical conditions should not? We don’t know. We were institutionally too afraid to ask.

Has the medical profession aged such that it has developed its own arthritic restrictions in compassionate learning and humility? My daughter and I hope not. We urge all involved in daily care and service delivery to try to maintain at least a tempered enthusiasm for events and concurrences that challenge the status quo. We urge you to permit yourself continued intellectual engagement in the evolving enterprise of health and wellbeing. We don’t know all the answers. We don’t even know most of the questions.

Please stay curious.

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