2006-03-23 - 3:45 p.m.
I got a call this morning from a research study I�m in � the Sonya Slifka Longitudinal Multiple Sclerosis Study. Really, it�s just a survey-type thing. They call me every 6 months to ask a bunch of questions. I�d recently gotten a few calls that I couldn�t answer on my cell from a Massachusetts number I didn�t recognize. I knew it was the study because they never leave a message.
I think this has to do with some bizarre obsession with privacy or security (y�know after 9/11, now more than ever!). What if someone listens to their message and finds out I have MS? Oh my goodness! I suppose there are people who keep it guarded (I did in the beginning), but I regularly use a wheelchair and it�s pretty blindingly obvious something is wrong with me. Furthermore, after almost 5 years in the study, they still won�t accept that the number they have is my cell phone and no one hears messages but me.
They sometimes send me a blank journal in which to dutifully record how much time and money I spend on MS-related things. I throw this out. I have a life with better things to do than carefully keep track of my illness. The only questions that pertain to stuff you might write down in this usually have to do with how many days you were bedridden because of MS. Thankfully, this has always been zero and I think it would stick in my head if it were more than that.
They also ask how much money you�ve spent on various things over the last six months. However, the interviewer usually converts this into a range I can pick. Did I spend $200-$500 on non-prescription items for my MS? Yeah, probably. Nya gets me to take a lot of dietary supplements that are supposed to limit the effects of my condition. Curcumin (from turmeric) and tryptophane (from turkey) and fish oil (from fish). Would I take this stuff anyway if I weren�t sick? Probably not (although I realize there are some people who make a lifestyle out of herbal pills).
A big problem is that the survey seeks to bifurcate things into �because of MS�/�not because of MS�. This completely overlooks the fact that MS just becomes an integral part of people�s lives. For example, I order a lot of Chinese food delivery these days. I often get groceries online. Is this because of MS? Well. Cooking myself involves burning flames and sharp knives and scalding water that�s a big hassle to deal with. As I don�t yet use a power wheelchair and am not good at rolling myself manually, I don�t go to the supermarket without Nya (grocery shopping is fun together anyway).
But would I do these things if I weren�t sick? Maybe. There are a lot of people without MS who order Chinese food delivery or get deliveries from Peapod. MS or not MS? Questions that don�t leave room for a little vagueness seem poorly thought out. Of course, once a survey�s questions are designed, interviewers have to ask the same ones year after year to get any meaningful data. Once funded, a badly-designed experiment or survey will get carried out ad nauseum. And who�s going to ever want to look like a jerk for pulling financing from �a research study on MS�?
I�ll lay the blame on the study�s sponsors: the National MS Society. They are a shining example of the fact that social service organizations often count on observers not to look too hard for actual results. After all, the group is doing �good work�. Don�t scrutinize too hard! In a Brown class we once learned about Michel�s Iron Law of Oligarchy. Basically, it notes that groups originally formed to represent a certain constituency eventually lose track of that group�s interests and end up mainly representing themselves.
Hence, unions that were created to collectively bargain for certain laborers never go out of business, even when their original industry wanes in importance or goes out of production entirely. Over time, they start to speak for other workers in industries increasingly distant from their original intent (think of how the Teamsters now represent radio announcers). Or consider the US Department of Agriculture�s Rural Electrification Administration, created in 1935. As farms got power lines over the decades, this program got into more and more contorted businesses (giving federally-subsidized loans to telecom firms?). It wasn�t abolished until 1994.
The National MS Society was founded in 1946. They�ve done some excellent work in the past and I don�t mean to disparage that. If nothing else, their efforts helped lead to a general awareness of what MS is. Nowadays, if you say �I have MS�, people will have some sense of what that is or at least know what the letters are short for. By comparison, if you say �I have ALS�, you may get a blank stare (I�m not even sure what it stands for). And certainly there is a great need for data from a large sample on the progression of MS over time that the Slifka Study purports to seek.
But I�d submit that today the National MS Society only tenuously serves the people it was created for. Soon after I was first diagnosed, I emailed them in somewhat of a panic. Banning federal funding of stem-cell research was a newly ascendant topic in the news and I realized that I was suddenly a potential beneficiary of any therapies derived from it. I looked to the Society for some reassurance that they were taking a strong stand on this issue. I got a very short email back saying they had no position on the subject. (Of course not, I realized in retrospect. Taking a stand on such a politically divisive issue could be bad for fundraising�)
Around the same time, I wanted to go to one of the meetings they held for the newly-diagnosed. But they didn�t have one in Boston, just suburban locations. I figured I could get to one at their chapter headquarters in Waltham, relatively close by. I called to ask how to get there. The woman who answered gave me driving directions. No, I explained. I didn�t have a car and wanted to know directions by public transit. I knew there was a commuter rail out there; was there also a bus? Uhm. She had no idea. She thought there was a bus somewhere around, but she drove to work herself from another suburb.
I never went to a newly-diagnosed meeting. (What would happen anyway? Is it like AA? �Hi Geoff!�) I�m sure the National MS Society helps someone. It�s just not me. You may have already donated to them, as they run most MS walkathons and put out most solicitation boxes. But I�d consider organizations that mostly sponsor medical research more worthy causes. Try giving to the Boston Cure Project or the Montel Williams Foundation.
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