Society's perception of MS: how bad is it?

In response to your comments about the prognosis and severity of MS. There is no doubt in my mind that MS is a disabling disease and leads to disability in the majority of subjects given sufficient time. However, this statement refers to the prognosis from natural history studies done in the the pre-DMT era. I believe that in the current era with aggressive treatment early on the prognosis has improved. 

The following figure demonstrates UK Society's perspective on the disease. On the y-axis is utility an index of quality of health used by health economists; 1 is perfect quality of health and 0 is death. Your utility on the day you are born is 1 and gradually drops to 0 when you die. A value less than 0 is considered a quality of life worse than death. It is alarming that in the UK a PwMS with an EDSS of 8.0 or 9.0 (weakness in all 4 limbs and/or bed-bound) is considered to have a quality of life worse than death. I am told that no other chronic disease scores this low. Alarming?


Orme et al. The effect of disease, functional status, and relapses on the utility of people with multiple sclerosis in the UK. Value Health. 2007 Jan-Feb;10(1):54-60.

"I use this figure as the backbone of my argument to support early aggressive treatment. How can we not treat this disease aggressively? Despite the poor Societal perspective of MS, MS does not fulfill contemporary criteria for being a terminal illness. Would you agree? If not we can continue the debate."