Wow, I'm really glad to read these progression stories. You all look so normal to me
I find the idea of a 20 year nothing follwed by a 2 year zap really interesting, I would have expected the decline to be more gradual somehow. Why all of a sudden, why then? Sandy did you have a child natrually or something thinking along the vein lines and straining? just curious.
Lew you and jogging that's like me I was sort of shocked when I just started to slip. Ty was not out yet , novantrone I was dead set against because of heart issues it is a poor choice for me. I would have gladly done tovaxin for its safety profile if it had shown results as they hoped. Frankly the vaccine model was put forth in about 93, I watched for that development for years and years thinking it was the best thing coming because it was so targeted, even though by the time it was getting close I was in the not autoimmune camp. Frankly when it did not show the end point I was really sad, but it also reaffirmed for me that we are off track maybe with autoimmune ideas.
that Copaxone 10 year study is a joke.
PX I KNOW! me too. I also take copaxone. WHen I saw the study I was so disgusted.....
then I went to my MS clinic doctor and he actually came in with a great ceremonious flourish "Marie great news! They have done and have released the 10 year cop study.....blah blah......" In that moment I was so disappointed in him and my respect for his ability to assess this material critically was completely unmasked for misguided.
I did not see it happen this way, but knowing MD offices what PROBABLy happened is that the Teva rep came dashing in the office with the same flourish to see HIM and gave him the full court press. Charitably, my assumption is that he never read the study directly, he was very busy person running this large clinic and trials.
make trials to show anything
Yes that is true, all people doing a trial of any kind starts out with a bias a belief about the outcome and they set out to show that specifically. They make no bones about it at all. That makes a very good argument for all trials to be run by independant organizations and not the companies themselves.
Candace pert the woman who discovered the Muu receptor was giving a speech in which she said, paraphrased, that people THINK science is this big objective thing where the scientist asks a question then sets out to design an experiment totally unbiased about what might come out, but that is incorrect, in reality every scientist has a belief and they set out specifically to prove that, and if the first experiment fails they try again until they get it.
So basically if your theory is total crap you won't be able to show it but as long as you keep trying and continue to think you are right, you can probably find a way to demonstrate what you believe is true. That's why we have peer review, so other people who don't believe things the way you do can see if you have changed their minds with your experiment and idea. If you have not shown it well then it "should" go down in the review process as bogus.
That's also why science gets stuck, if someone puts out a paper today that says "MS is autoimmune in this paper we will show how knocking out (thing) in Theiler's mice results in better outcomes........." That paper will get the nod of approval and will be reviewed as obviously right where as the paper that says the opposite is viewed as "probably wrong" and picked on mercilessly or totaly ignored (my ms doc did not read Prineas and Barnett's paper, he said he did not think anyone seriouly thought MS might not be autoimmune.........when that paper was showing MS autopsy brain samples with NO immune activation. Well it's pretty hard to come to a new conclusion if you dont READ the other papers
that's why the doctor getting his information direct from the company is so diabolical. They need objective review to see if it is what they company says it means, barring that they need to perform that function themselves, but don't actually have time.
The abstract on pubmed does not talk about the 10 year study results the way my doc did which was directly from company materials and talking points. Subesquent ads have hinted at the same "spin" sbout its long term effectiveness.
ANd no worries about off toic I just want to talk in general about these things, whatever strikes your fancy about what I posted is fine. BUt it is interesting, though only of some value because of the timing, that the 91 study no one could even get DMD yet, the '01 follow up showed no changes in progression rates though DMD had been introduced , but so few were taking anything that it is impossible to say how overall progression rates have been impacted by these drugs on a large MS population like that.
the real study we need a large study of a population with whatever DMD's are now availble. Are we having any impact on progression with these approaches applied as they are today?
Thanks for the thoughts!