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mechanisms. For example, pain, fatigue, and memory impairment are often among the earliest manifestations of the disease, yet they were virtually unrecognized as symptoms for many years. These symptoms are prevalent, troubling, and yet correlate only weakly, if at all, with neuropathology as revealed by current neuroimaging techniques. Quality-of-life measures might also provide more sensitive outcome measures of clinical efficacy of new therapies, and importantly, they measure the outcomes that concern patients the most.
Given the millions of people who will be living with MS now and in the future, it is important that the focus on curing MS not come at the expense of efforts to address the disruptions that pervade routine daily activities, personal relationships, family life, work responsibilities, and social involvement.214
LIVING WITH MS
If a cure were found, would I take it? In a minute. I may be a cripple, but I'm only occasionally a loony and never a saint. Anyway, in my brand of theology, God doesn't give bonus points for a limp. I'd take a cure; I just don't need one. A friend who also has MS startled me once by asking, “Do you ever say to yourself, ‘Why me, Lord?' ” “No, Michael, I don't,” I told him, because whenever I try, the only response I can think of is, “Why not?”
Many people with MS cope remarkably well, others less so. Understanding the traits and conditions that enable people to cope so well can provide insights necessary to help others, but obtaining these insights is complex. Conducting an investigation about people with MS similar in depth and scope to the multisite Medical Outcomes Study, a series of multisite studies funded by the Robert Wood Johnson Foundation in the early 1990s,175
would be invaluable, but also methodologically and logistically challenging and enormously expensive.
A growing body of research describes the lives of average people living in the community with MS. Many of these studies involve surveys, the application of various psychometric instruments (functional status measures, quality-of-life indices, and other instruments targeting specific topics), and qualitative methods (reviews of in-depth interviews or focus groups). With the exception of the Expanded Disability Status Scale (EDSS; see
Appendix D), there is little consistency in the survey forms or instruments used across studies. In addition, despite the experiential insight gained from well-conducted qualitative studies,41
they rely on very small samples from specific subpopulations, and the results cannot be assumed to apply to the full range of people with MS. Some studies have involved large numbers, but they tend to focus on single, well-defined issues (for example, employment). Perhaps most importantly, most studies treat people with MS as a homogenous group, as opposed to groups of people with markedly different disease states.51