KevinM
Senior member
- Joined
- Mar 30, 2019
- Messages
- 559
- Reason
- PALS
- Diagnosis
- 06/2019
- Country
- US
- State
- FL
- City
- Tallahassee
I just finished my virtual appointment with Dr. Pulley at UF Health, who I like quite a bit because he is so down to earth and willing to spend as much time as I want answering questions. He is helping to oversee a new trial with metformin, an oral medication that was originally used for diabetes but is also being used for Alzheimer’s and FTD, to see how it works with ALS. It is a 2:1 trial, in that 2/3 of the participants will receive the oral medication and 1/3 the placebo.
I asked him if any of the other treatments currently in Phase 2/3 trials stood out, and he said, no, in his review of every bit of research, none looked particularly more promising than another. In particular, he does not feel that stem cell therapy, be it Nurown or others, holds the high promise many think it does.
I know this throws cold water on the hopes of so many, but it does echo some of Laurie’s and Nikki’s comments about tempering expectations. We’ve all seen or heard about the videos of several patients appearing to improve dramatically after being convinced they received Nurown (instead of the placebo), but I hope we understand that the “breakthrough” everyone so desperately wants may not be right around the corner. Maybe he’s dead wrong, but he does know his stuff.
In the meantime, let’s just try to live for the day and find happiness wherever we can.
I asked him if any of the other treatments currently in Phase 2/3 trials stood out, and he said, no, in his review of every bit of research, none looked particularly more promising than another. In particular, he does not feel that stem cell therapy, be it Nurown or others, holds the high promise many think it does.
I know this throws cold water on the hopes of so many, but it does echo some of Laurie’s and Nikki’s comments about tempering expectations. We’ve all seen or heard about the videos of several patients appearing to improve dramatically after being convinced they received Nurown (instead of the placebo), but I hope we understand that the “breakthrough” everyone so desperately wants may not be right around the corner. Maybe he’s dead wrong, but he does know his stuff.
In the meantime, let’s just try to live for the day and find happiness wherever we can.