I am disappointed that your policy is to remove threads/discussions of compounds unless they are prescribed. I feel such a policy is a disservice to pwp. I believe people read health issue forums to find out what works for other people that is not government approved, that is not evidence based, and/or that is off label. The FDA and UK has approved so precious little for PD, we hardly need forums to learn what can be prescribed.
I would like to see what your policy would be if every person involved in setting policy had PD. There's a suggestion I believe would greatly improve your contribution to pwp.
Isradipine is a good example. It cannot be prescribed for PD - yet. It was approved by the FDA in 1990 for hypertension. Currently, it is in it's 3rd year of phase III trials in 57 locations in Canada and the US to determine if it slows the progression of PD. That means dozens of panels of scientists, doctors, PD neurologists, etc. and executives of universities, governments, and PD foundations are betting tens of millions of dollars that it will be approved as safe and effective to slow PD.
That's good enough for me. I'm taking it. Slowing my progression now instead of years from now waiting for FDA recognition will make a big difference in my life.
I learned about Isradipine on a PD forum. When you remove threads, i.e., when you control what one person writes, you control what other people read and therefore what they think.
If I had not learned about Irasdipine from a PD thread, I would not have been able to research, find out what a harmless, ineffective drug (for hypertension) it is and would not have been able to decide what's best for me. With all due respect, your organization does not know me or anything about me and, therefore, cannot possibly know what is best for me. Consider letting people do their own research, make and be responsible for their own decisions.
I agree with Logic. There is too much $$ self interest involved in the process for me to trust the medical establish puts my best interest before their own best interest.
To be completely candid, I'm a 70 y.o. and find your deciding what's best for me to be arrogance and I don't appreciate it. If this forum censors discussions about every compound except those that are prescribed, it has no value to me.