I like your platform idea for trials, and agree with a lot of what you say. But as a senior citizen living with MS, I believe you and the entire ecosystem underestimate our risk tolerance. We don’t have that many years left, and do not wish to spend them declining more rapidly than our cohort. Many of us would willingly accept more risk than the medical establishment thinks. To put it in stark terms, if I had a 10% chance of death, but a 90% chance of reversing my symptoms? Sign me up!
But of course, this has a lesser reward profile. I still would consider, even at those odds. But the trial indicated that a more aggressive monitoring protocol, per the Conte letter, reduced the real risk substantially. The main point, however, is that the choice is taken out of our hands; and we, the patients, are the ones that suffer. FDA and the medical establishment do not.
Thank you for these insights and suggestions. So incredibly helpful!
"Independence narrows quietly, year after year."
This might be the best (and most poetic) description of my SPMS experience.
I like your platform idea for trials, and agree with a lot of what you say. But as a senior citizen living with MS, I believe you and the entire ecosystem underestimate our risk tolerance. We don’t have that many years left, and do not wish to spend them declining more rapidly than our cohort. Many of us would willingly accept more risk than the medical establishment thinks. To put it in stark terms, if I had a 10% chance of death, but a 90% chance of reversing my symptoms? Sign me up!
But of course, this has a lesser reward profile. I still would consider, even at those odds. But the trial indicated that a more aggressive monitoring protocol, per the Conte letter, reduced the real risk substantially. The main point, however, is that the choice is taken out of our hands; and we, the patients, are the ones that suffer. FDA and the medical establishment do not.