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10-15-2016, 07:19 AM | #1 | ||
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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 |
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10-16-2016, 08:18 PM | #2 | ||
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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
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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