Category Archives: MS research

How We Measure Success: Beware Dangers of Metrics Posing as Reality

This do it all scale can tell me my weight, height, body fat percentage, total weight of my fat, and more...if I believe it to be accurate.
This do it all scale can tell me my weight, height, body fat percentage, total weight of my fat, and more…if I believe it to be accurate.

In our hustle and bustle world, it seems there is an increasing pressure to do not just “better” but to do “optimally.” We want to know we could have done no more and be no better than we are. This desire can lead us down many false paths as we attempt to quantify “better” and “best.” How do we measure success?

At 9:48 on April 13, I stepped onto the new scale, height and body fat analyzer at work outside our little convenience store. Then after my lunch run, I decided to see if there was an impact from my run. Since there was no line, I stepped right up. One forty-five minute run resulted in my losing 6.4 lb. of fat! It was such a miracle run, I even gained 0.4 inches in height. The machine even gave me a receipt to prove it!

This machine is a very convenient way to track some basic health stats. However, there is no way I burned 6.4 lb. of fat in a 45 minute run. What this test shows is our need to question the results and measurement error before drawing conclusions. The simplicity of the two measurements claiming to measure the same things seems like a great test, but if results like mine were real, I would be a biggest loser coach on a team that never loses. Alas, life is rarely that simple.

Do not think this is simply about my fat percentage as read by a scale. We make these measurement errors all the time in our desire to have measurable, quantifiable results. With multiple sclerosis, drugs have been approved for more than a decade based on their ability to reduce the number of new lesions seen on MRI’s of patients’ brains. It’s an easy, if expensive, measure which gives researchers a nice quantifiable measurement from which they can claim “drug X is an improvement.” However, the question remains as to whether the lesion test is a good test for the reality of the patients’ multiple sclerosis progression. I and many other MS researchers have come to believe the overall brain volume/shrinkage is probably a better measure of MS damage, but that measurement isn’t enough on its own either to define the damage.

At some point, like after my run, a look in the mirror and noting which belt notch I use is probably the better bet to determine the impact of my run, even if the measurement is less precise than the super scale pretends to be. Similarly, I would never take the results of an MRI showing lesions as the best sole measure of my MS. Some days I will feel awful and tired with new symptoms, and the test results might or might not show why. Neither result changes my reality for all my attempts to quantify the impact of my MS today.

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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 patientslikeme.com 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).  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2515351/

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 patientslikeme.com, 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.

 

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