Category Archives: MS

Two Views of Same Data on Life Expectancy

A Dog's secret to a long happy life...play hard and find a good teddy bear with whom to sleep.  Could it be that simple?
A Dog’s secret to a long happy life…play hard and find a good teddy bear with whom to sleep. Could it be that simple?

Do Numbers Lie or mislead? I suspect we just read into them what we expect “truth” to be.

When I started as a Survey Program Analyst almost 16 years ago, I remember working on some politically sensitive data. My boss said in a somewhat cynical tone, “Tell me what you want to prove, and I can find the statistic to ‘prove’ you correct.” Since then, I have enjoyed running across those statistics which can be used for either side of a disagreement as “proof.”

I was at a healthcare bazaar at my work last week where different supplier came to sell their services. There were insurance companies hoping employees would switch to their insurance or perhaps sign up for the first time. As I walked around, I watched their interest in selling to me predictably fade quickly with the mention of my MS. It was like the Soup Nazi in Seinfeld, saying “No long term care insurance for you.”

I get it. Still, I did have some interesting conversations there. It is enlightening to see how caught up in rosy narratives we become when faced with numbers that may say what we want to hear. One of the employee assistance plan workers told me the story of one of his friend being diagnosed with untreatable cancer. The doctor told him and his family to do what they can to make the patient happy because studies show “Happier sick people live longer.” The worker and family took this to mean if they can keep the patient happy he might beat the cancer. This narrative assigned to the facts of less happy people dying quicker gave them power over that truth which they would otherwise be forced to just endure.
I guess I was a Debby Downer, because I pointed out the other “obvious” to me possible explanation for the numbers. Sometimes being really sick and dying is just miserable. Perhaps some of those unhappy people were unhappy because their illness was so miserable to endure, and it was killing them whether they were happy or not? Without knowing what made the people in the study unhappy, it is hard to say why the unhappy people died quicker.

To my, ignorant of the individual facts mind, the narrative where sick unhappy people die sooner than happier ones, suggests a bleaker mindset closer to death. This seems more plausible than healing by positive thinking. I think about the symptoms I am to watch for as a JCV positive patient taking Tysabri. I am supposed to watch for down turns in my mood because they could be a harbinger of PML. Will my happiness ward off PML or is will a darker mood be a canary in the mine?
Maybe I should worry that mind so readily dismisses my mood as a cause of my body worsening. Perhaps I am already doomed.

Of course, I have few objections if my family and friends want to make me happier all the time so I can live longer. Maybe I should start an Emotional Go Fund Me and see how much positive energy is directed my way?

The happier patient population living longer could also be a result of the body having to spend less energy enduring symptoms. I know my symptoms are worse when I am stressed. Of course I also stress over increases in symptoms. I will concede it is plausible that happier patients live longer, but which is the cause and which is the effect in the relationship between happiness and long life is undetermined in my mind.

One happy bear scout
One happy bear scout

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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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