Interesting and important article in the Boston Globe this week ... doesn't call out PD specifically but critical truths and frictions are noted ... short-term versus long term-expectations. Certainly not a trivial subject for any patient community but nor for the researchers / funders. At MJFF we aim to develop a view on science and opportunities with a tone of optimistic realism (a "yes, if" rather than "no, because" attitude) and then act aggressively in that context.

Hype vs. hope in medical research - The Boston Globe

Best, Debi

As I see it, in addition to real progress, a product both of research and clinical intervention is hope: hope that a cure will be found, before it's too late for me; hope that I will feel better tomorrow than today; hope that my rate of decline will slow.

Hype is both the friend and enemy of hope. On the one hand, it allows a more frequent release of "breakthrough" announcements, each leading to a hit of hope; while, on the other hand, too many unfulfilled expectations leads to grade inflation and mistrust, and a decline of hope. On balance, I suspect that a moderate amount of hype is beneficial.

I liken the situation to that of a therebo (from THERapy and placEBO, something that may have true therapeutic value or may just be a placebo, we just don't know). A piece of research is a therebo. It may contain truly useful information or it may turn out not to, but in the meantime it generates hope. I wonder what would happen if a news report from a totally reliable source was made that a cure for PD had been found, and which was free and available to all PwP within a month. I suspect that there would be a surge in hope, possibly leading to a surge of dopamine, and some symptomatic relief.

If this perspective of hope and hype is accepted it follows that efforts should be made to maximize the benefits.

John