Girija makes many good points.

In my opinion, the placebo effect makes the interpretation of results difficult but, otherwise, it's to be valued.

The Grove protocol makes sense. Essentially, it shifts the burden of proof from one of efficacy to one of no harm and it shifts the focus from the set of all PwP to the individual. Once safety is shown, thousands of people could try the drug, monitoring their progress, stopping if symptoms worsen. This could mean that some people benefit, while others don't. That's OK: rather improve things for some, rather than none. Add to this an online reporting system and we get an incredibly powerful learning environment, that could give answers in months to many PD issues.

As I see it, the fundamental difference between the priorities of researchers and most PwP is time. I have a scientific interest in all the research but, unless it's going to be available in the next few years it misses the mark for me.

What matters to me are questions like: should I use curcumin? should I exercise more? should I try transcranial stimulation? should I move house? should I use therebos*? should I dance? what's the best way to reduce constipation? The common point of all these questions is that all of them refer to potential therapies (I make no claim that they work) that are available now.

What matters to me are answers about what I should do now. For instance, on the balance of evidence available now, should I take curcumin today?

This isn't a science v non-science argument. I take the scientific approach as a given. Rather, it is a case of making the best job with limited data.

I realize the selfishness of my position. There is another constituency involved: those who will get PD in the future. They are not interested in the merits, or otherwise, of dissolving Stalevo in orange juice. They are interested in detecting and stopping PD. So, the issue is also an ethical one. Where should I put my efforts? And where should other existing PwPs put their's? And where should humanity at large put its resources?

* therebo: an unproven, potential THERapy that could also be a placEBO. Examples: curcumin, grapefruit, nicotine patches, this forum etc..

John