Then today at the Masters of MS website, I read about the 30-person Buffalo trial, which will also have a placebo group.
"Our group in Buffalo is undertaking a larger placebo-controlled trial (PTA versus a “fake” treatment) in 30 RRMS patients," Dr. Zivadinov,
And there was talk earlier about Dr. Dake that he too will have a placebo group when his study gets underway.
I'm trying to make a list of things to think about before joining a placebo-controlled trial:
1) how long of a trial is it...if you are in the placebo group, how long until the end of the trial...will treatment be done at that time?
2) how confident are you in CCSVI theory...the more confident, the more you should be looking for straight-up treatment to avoid the risk of not being treated...the less confident, then maybe leaving it up to chance might feel more okay...
3) how much do you typically progress in the amount of time the trial will take (if you are more likely to progress, then the risk of no treatment would seem to be higher)
4) what other options do you have, have you been able to find your way onto the lists of a doctor doing straight-up treatment or approach local doctors (if you haven't any other options, then the risk of no treatment is where you'd be anyways, and here you'd have a gambler's chance at treatment)
5) do you have insurance? (I think randomized trials are free to participants, which would benefit those who are uninsured or underinsured or anyone who is shut out from treatment due to cost)
6) would you genuinely be okay with it if you ended up in the group that does not receive the venoplasty treatment?
I'd say, let's not gamble with our health, but it's all a bit of a gamble...an educated gamble, hopefully.
I'm not looking to argue about whether placebo-controlled trials should or shouldn't be done; from all appearances, they are in the works.
For me the complexity is this: I believe randomized trials are important if we want this to be proven as quickly and completely as possible, which I very much do...but at the same time I would not sign up for one...we all have to look out for ourselves...and I worry for anyone here who does sign up for such a trial.
Dr. Sclafani's response to this awhile back was something along the lines of, who knows, maybe the placebo group will fare better than the venoplasty treatment group? ... which I guess goes back to #2 above, confidence in the treatment.