A plea for patience
Posted: Thu Dec 10, 2009 5:36 pm
I am very, very excited about this new information and wonderful hope. And I too was in the process of getting in to see Dr Dake for evaluation and possible stenting. I was very disappointed when the plug was pulled on that possibility. I am 57, have had PPMS for 35 years, and knew that new drugs took 15 years or so to develop and there was nothing eathishattering in the pipeline. As far as any real hope in my lifetime, I was beginning to do the math ...
However I believe that a scientific study is the right thing to do. It will provide scientific rationale to those working in this area. A study will also provide the investigators with "cover" to investigate freely. If there is an institutionally approved study with an approved informed consent, the investigator is protected.
And although it is frustrating to those of us who may have to wait months and months for some treatment, the fact is that a well publisized mishap or two could set the entire effort back many years.
As much as I hate the delay, we need to be patient.
However I believe that a scientific study is the right thing to do. It will provide scientific rationale to those working in this area. A study will also provide the investigators with "cover" to investigate freely. If there is an institutionally approved study with an approved informed consent, the investigator is protected.
And although it is frustrating to those of us who may have to wait months and months for some treatment, the fact is that a well publisized mishap or two could set the entire effort back many years.
As much as I hate the delay, we need to be patient.