Category Archives: application of logic

Death of Expertise and the Birth of Alternative Facts

O's fact: "This is a cool pig's head." A's alternative fact: "This is disgusting!" My fact: "Looks like the pig is done, and we are eating well tonight!"
O’s fact: “This is a cool pig’s head.”
A’s alternative fact: “This is disgusting!”
My fact: “Looks like the pig is done, and we are eating well tonight!”

I was recently pointed to an essay on the perception that our country faces a “Death of Expertise.”. The scary part is the article was written in 2014. As we now seem to live in a world of facts and alternate facts, I am becoming more and more aware how limited our perceptions are when it comes to our ability to discern actual reality. The lines blur, and worse the titles we use to convey a sense of expertise are often cheapened by those who benefit from “alternative facts.”

As a patient advisor to the American Board of Internal Medicine, I find this article on the Death of Expertise relevant as we begin to embrace patient centered care. We are looking at the impacts of the patient becoming a partner in their healthcare rather than a subject upon whom the art of medicine is employed to better their health. It’s interesting to me because I find myself frequently commenting to the doctors there is no way most patients know enough to really understand the impacts of a treatment on their health as a whole. We know what we experience, and we tend to assume what did not happen could/would never have happened to us. Many have little or no understanding of likelihoods, especially rare ones. Our minds are not primed to understand such information. As a result, preventative care can be a very hard sell, and it takes only a little bit of fear mongering to send us down an anti-vaccination route.

Of course, our body is a complex system (note: different from a complicated system that it also is). We are still learning the down stream implications of many of the things we do to and with our bodies. I recently gave a presentation to doctors, insurers, regulators and patients on patient generated data and how we can use it. It is “big data,” a term very few understand. Big data is simply data collected from many sources, collected for different purposes and then used as if one data set. We can use it to assert a position or confirm a position, and we are already doing both. We are just in the infancy of understanding how best to use the huge trove of information, and one of the challenges is pulling in most uninformed perspectives into something useful.

The ability to gleam and present such insights is where I predict the next generation of experts will arrive. The best of them will be able to sift out the trash to present and stay current with the overall trends. The hard part is recognizing the limits of our knowledge. The Dunning-Kruger effect is real, and ironically one mentioned at the last board meeting. When it comes to medicine, we have the added frustration coming from double complex system issues around both the complex system that is our health and the overlapping yet distinctly separate complex system that is our emotions about our health and healthcare.

Still, we are coming a long way at a fast pace. As our traditional study based medicine is either directed or confirmed by huge amounts of data, our knowledge is refined faster than ever. Heck at the last meeting, the doctors were talking about the study in Stroke showing an increase in strokes and dementia for people who drink one or more diet soda a day. It was mind breaking to them, and they were shocked by my only mild surprise. I told them I stopped drinking coke zero because my headaches were worse, and when I switched back to regular coke I looked at other patients’ info. I was far from alone across neurological conditions to note worsening symptoms on diet sodas. As a result, I was less surprised than they at a link between diet sodas and neurological issues. My knowledge was not based on a formal study, and I would never present it as fact. However, a smarter person could have made the connection and presented a decent level of proof from expanding the small amount of research I did, and they could present something I would believe as much as my doctor telling me. However, I need the doctor to tell me which of the millions of “facts” and “alternative facts” available to me are most likely to help me feel better and live the life I want to live better. Alas, I do not have the base to make such distinctions well.

That is why I need a doctor. What’s more, that is why I need the term doctor to convey a level of current expertise. It is why I endorse the idea of a body of “experts” who can set a minimum bar to be called an expert in their field. Note that is what the American Board of Internal Medicine is. It is a group of doctors (experts) who say to be accredited with them, a doctor must know X.


MS, Motility Issues, and Another Approach

Keep trying. If you keep failing, look for other sources of strength.  You can climb higher than you ever have before.  O discovered the importance of his feet for this climb, his first rope climbing success.
Keep trying. If you keep failing, look for other sources of strength. You can climb higher than you ever have before. O discovered the importance of his feet for this climb, his first rope climbing success.

During the last week of 2014, my oldest daughter, A, spent three days in the hospital for slow motility issues.  Before A’s recent bouts of stomach issues, I would have been hitting up Google for what “slow motility” might mean in terms of the gut, but after the hospital trip I mentioned in the last post I have been thinking about it a lot.

Slow motility is not a blockage in the gut (constipation).  Rather, it is a great slowing down of the digestive track, a slowing of movement down the track and a slowing of absorption of nutrients.  So with a slowing of the body’s ability to move food down the track being the culprit, I began to wonder why I never hear of MS patients with slow motility.  MS impeding our nerve signals seems to slow every other part of our body’s ability to respond to stimuli.

With that question in mind, I went to where Bowel problems are listed as the sixth most common symptom of MS, but included under that symptom umbrella are “any difficulty in passing feces including constipation, bowel incontinence (loss of bowel control), and diarrhea.”  Motility issues are not mentioned, but I note my daughter has had all of those symptoms resulting from her motility issues.  A quick search for “motility” on the site netted nothing.  So I asked the board how many MS patients have motility issues.  The only 2 patients who identified as having motility issues had them predate their MS.  I would also point out many MS patients are on drugs for other MS symptoms which can cause bowel problems, and thus not all bowel problems experienced by MS patients are the result of MS.

If one assumes the common theory of MS these days, the disease is one where our immune system is attacking our nervous system.  These attacks destroy our nerve’s myelin sheath and eventually its ability to transmit signals.  There are numerous studies about the slowing, sometimes to a stop, of parts of the nervous system in MS patients.  There are also numerous studies showing the majority of a healthy immune system resides in our gut-associated lymphoid tissue (GALT).

If our immune system is what is attacking our nervous system, why do we have comparatively little damage to the nervous system closest to the largest concentration of cells in our immune system?  This is the question which has been itching me for a week.  I have posted the question to the MSresearch blog out Cambridge England, and one of their researchers said he would have to look to find me the answer.

I have a few theories which would/could explain the issue.

1)  Measurement error:  On, bowel problems were reported but not motility issues.  I am not sure most people with bowel problems get motility studies to assess the cause/ true nature of the problem, and I bet this goes double with MS patients.  My experience is the difficult to explain or prove is often assumed to be the result of MS without ever questioning how MS caused the problem.  So many of these bowel issues could be motility related, and we would not know.

2) It is possible the 70% of our immune system is not the part of our immune system attacking our nervous system.  If this is the case, we have effectively eliminated 2/3 of our immune system as a potential cause of our MS.

3) There is something in the gut weeding off or neutralizing the cells responsible for triggering an attack on the nervous system in our gut.  If this is the case, is this cause replicable outside our gut?

I am sure there are more possibilities, but I was never a very good biology student.  I just find myself trying to attack the MS problem from another angle.  Too often, we respond to what we see in MS with regards to symptoms and progression.  It’s natural to have our attention focused on what we can observe and better yet, measure.

If the measure of the power of science is its ability to predict, then it follows science often draws its power from what we observe.  The trick is to recognize when we fail to see what we expect to see.  For even such failures represent an observation. It is with that recognition that we can start looking for the cause of failure in our expectations/hypothesis.  Perhaps, the answer is already obvious to those who have studied our immune system and our gut.  I just rarely see mentioned anywhere in our nervous system immune to the effects of MS.

Maybe we should look where the symptoms fail to appear in an effort to better explain where and how they do.