There are two important things to remember to ask yourself whenever you see a news or personal report of a study regarding muscular dystrophy or any disorder. This also applies to regular human behavior, politics, opinion, etc.. Be especially wary if there’s something being sold to you!
1. How many people participated in the study?
If you’ve ever taken a statistics class, you know it takes a certain number of samples to create a population significant enough to create reasonable results. It also helps if the population comes from a variety of different places, makeups, and more. If a study only consisted of ten people, you need to take the results and conclusions of the study with a grain of salt. Unfortunately, “journalists” like to latch on to these small studies quite often and rarely report how many people were studied, particularly if the news makes for a catchy headline.
2. Are you being presented anecdotal evidence or actual evidence drawn from the scientific method?
I came across a site that talked about a treatment for muscular dystrophy. The “evidence” was a set of video clips showing a single person being treated by this method both before and after six months of treatment. Apparently the test subject could climb steps faster and had more muscle tone. Obviously the fact that only one person was shown should raise a red flag. But in the videos it appeared this person had also lost weight. I’d imagine if I would have lost 20 lbs, steps would have been easier to climb as well. One of the video clips showed him “jumping” higher too. Unfortunately the videos were taken from different angles so there’s really no way to say that his jump was significantly improved. The big problem here is that the results are subjective, not reported via scientific means (a white paper or published report), and again, based only on one person’s results.
Now it might seem that I’m trying to rain on the parade here. Maybe the treatment does actually work. However, I refuse to get my hopes up based on non-scientific proof. Until I see scientific evidence, the “treatment” might as well be some gypsy remedy being sold out of a carnival trailer. If a doctor has actually found a treatment for a disease, then this doctor should believe in it enough to spend his/her own money getting the proper studies done.
I have seen people spend a lot of money on unproven “treatments” and “cures.” This includes everything from homeopathic supplements to actual surgeries and medical procedures. My policy, however, is that unless I see verified scientific proof, I am not going to get my hopes up or open my wallet.
As a side note, I say the same thing about this blog — my stories are anecdotal, based on my personal experience and what works for me. No two people are the same. If something I do works for you, then great. I do think that a positive attitude is very helpful in dealing with muscular dystrophy and thankfully that doesn’t cost you anything.