Arron wrote:I cannot agree more, Wilson. Thank you to these outstanding individuals (and others such as Shayk) for sharing their time and knowledge with the community.
I think this collective on-line community DEFINITELY knows more about MS than the neurologists I've seen.
As far as the Cochrane reviews, I have read them with great interest. The focus on EDSS seems limiting to me- and the measurement of MS in general seems a very imprecise science. It would certainly be possible to measure disability more accurately- by using a combination of MRI, neuropsychological testing, self-report, EDSS, and other measures.
The fact that we haven't seen such measurement makes me cautious about ALL MS drugs.
I know for instance, in the case of SSRIs, they have administered Quality-of-Life scales in over 100 trials. They have never published the results. The reason (it is now revealed) is because while SSRIs do improve certain symptoms, they do not have a statistically significant effect on Quality-of-Life, as measured by these scales.
But if these data had showed a positive effect, you can bet your a$$ they would have trumpeted these drugs as improving quality of life.
So we have to keep in mind that at present, the pharmaceutical companies are able to get by with imprecise measurement and are allowed to withhold any data they find inconvenient.
It's quite possible, for instance, that they do collect data on self-report of disability, but it hasn't been good enough to report.
Cochrane is good- but not perfect. If we wanted a real frank assessment of what these drugs actually do, we would need full disclosure of the data.
But I really think all the ABCR drugs can be summarized as, "Mildly to moderately effective in the aggregate, but the best we have at the moment." That would be honest.