Well…that didn’t go quite as expected.
It’s been a while since I’ve posted, but there have been some changes in the studies that I’ve kept quiet about for quite some time. I wasn’t really ready to share my disappointment.
I left with the hope of the drug trials getting further approval and extending. I had an offer of participation from Dr Neumeister in longer-term trials, should they become available.
Unfortunately, that’s not what happened.
Both drug trials are no longer active; Dr Neumeister no longer works for NYU; all data from ALL THREE studies has been trashed; and there is a FDA investigation. Apparently there were numerous protocol violations and the NYU Institutional Review Board somehow intervened…at least that is the story as I now know it.
Also, after much persistence I found out that I had received a placebo in BOTH drug trials.
A reporter from the New York Times, writing a piece on the incident, approached me and I told him briefly what I knew: they were kind to me, considerate, and no, there was no follow-up. I was on my own.
I’m not sure how to feel about all this just yet. I am relieved about receiving placebos, and yet to say that I am extraordinarily disappointed would be a gross understatement. Disappointed in the outcome. Disappointed in how the studies were conducted. Disappointed in myself for…? Getting my hopes up? Not listening to my gut when things seemed wrong?
I’m not sure. What I do know is that I mourn that data. Deeply. What a waste.