In October this year at a conference on the treatment and research of MS, a paper was released with some very good news for MS patients in the very first line. It seems, “Mortality rates are higher in people with multiple sclerosis than in the general population.” As somebody with MS, I think it’s fantastic news because as far as I know the mortality rate in the general population is 100%. If one believes this first sentence, I am more likely than a person without MS to get another spin on this cosmic trip we call life.
Of course, the bummer is contained in the very next sentence where it says, “However, the reasons for the shorter lifespan in people with MS are not well understood.” I guess it all evens out in the end. We are likely to have more, though shorter life spans. Somehow I think the results as I have (misrepresented) presented them in these two quotes are not likely to be repeatable which leads me to the next video forwarded to me about our bias towards reporting findings we want to be true.
I’ve certainly seen this in MS research. Often times, new medicines become laughed at as the new “bee sting therapy” which still runs around the internet from time to time as well wishing friends and family try to suggest this new therapy. For MS, the latest is probably CCSVI, an attempt to stint clogged veins carrying blood from the brain. One cardiologist in Italy thought his wife’s condition was a circulation issue rather than an immune response attacking her nervous system. Because she showed improvement, he performed the surgery on other MS sufferers.
Note, while this procedure is performed in the U.S., many reputable centers have stopped. Nobody has even been able to show these blockages in veins happen more often in MS patients than the general population. What’s more, the results for all those who have had the surgery are inconclusive. Still, many patients grab at any hope because hope is what we want to hear. I worry the stints they use aren’t made for the venous angioplasty, and this may cause problems down the road, though they appear safe at the moment. I also worry veins seem to be able to find new routes without this surgery, so we may be needlessly introducing new problems and costs 5 years down the line. Additionally I wonder why so many for whom the procedure works seem to need it again.
The hard part is I can’t convince myself the doctors are being irresponsible, because every success is trumpeted. Furthermore, for those whom it doesn’t work, we aren’t seeing negative outcomes yet. Negative outcomes would include things like deaths, brain damage or other serious complications.
I’ve come to think the one thing patients with long term serious chronic conditions want from their doctor is hope or a validation their idea might help. However, I note there seem to be at least 2 studies saying it doesn’t provide measurable success for every 1 repeating the initial story of success. Lest one think patients are any better than researchers, one need only look at patientslikeme.com. Even patients are far less timely reporting why we stop a drug compared with reporting initial successes. We want any thing to help. Placebo effects?
I don’t care. Give me a placebo if it works :-).
(Continue to next page for family notes and stories)
K had her second birthday, and above is a picture of her response to trying a cupcake. Keep in mind she has had very little to eat by mouth since Jan.
Funny quote from O, “Daddy, why is your penis so white? Mine is darker.” This is a great conversation to have in a public restroom amongst the many chuckles.
Funny conversation with A:
A: “I can’t wait to be an adult! Then I can watch TV whenever I want.”
Me: “You know I’m a big Redskins fan, right.” Response is a nod affirmative.
Me: “They played today, and I didn’t watch a single minute of it. I was with you and the rest of the family instead because family is more important than any TV. Right now I am sitting here in the bathroom waiting for you to finish so we can read a book before bed. There are TV shows on now which I like watching, but you are more important.”
A: “But you have the power to watch whatever you want on TV. It’s not fair.”
Me: “With all power comes responsibility. I have the power to watch whatever I want, but I have a responsibility to you and O and the rest of the family. Even when you go to bed, I have the responsibility of walking the dogs and cleaning the kitchen. Then if I have any time and energy, I can watch TV.”
A:”Fine. If adults have all that responsibility, I wish I were God!”
Me: “You always complain we don’t understand you. You think I and others don’t understand you now? People have been trying to understand God for thousands of years.”
A: “What! Really? Why don’t they understand him?”
Me: “Why do you say he?”
A: “Because he’s big.”
Me: “There are species where the women are bigger.”
A: “There are no big females.”
Me: “Are female wales bigger than me? Yes. Being female doesn’t mean small or weak,”
A: “OK then I still want to be God so I can make the rules and watch whatever TV I want.”
Me: “I’ve noticed as I’ve gotten older, more power always brings more responsibility. I doubt the power of God is different. It may be, but it’s not my experience. You would be responsible for all people everywhere. With that much to do, I suspect TV may not rank high on your priority list.”
A: “Fine I will just be an adult and watch whatever TV I want. I don’t care about any other responsibilities.”
Me: “I hope you change your mind by the time you are old enough to live your adult days, but for now, it is time for bed.”
Here is another of my favorites of family life from the zoo this weekend: