Article on media hype, from both a patient and a scientific perspective
 

I came across this recent article while I was chasing up some citations (related to another thread). As you can imagine, nilotinib gets a mention.

“Media Hype: Patient and Scientific Perspectives on Misleading Medical News” | Israel Robledo

There are also a couple of related articles from Scientific American and MJFF.

Social-Media Hype about Diseases and Treatments Does Patients No Favors - Scientific American Blog Network

A Patient's Perspective on the Risks of Misleading Medical News | Parkinson's Disease

Israel Robledo, Scientific American, 2nd Dec, 2016 [1], wrote an interesting blog:

"Social-Media Hype about Diseases and Treatments Does Patients No Favors"

He writes:

'In my years of advocating for PD-related causes, hundreds of so-called “miracles” have been announced, all of which have proven to have disappointing results.'

While some of these are due to social media, many arise from other sources such as university press releases: just count the word "breakthrough".

But then, extraordinarily in this context, in my view, he writes:

"we are close to unraveling the underlying mechanisms of the cellular process of PD, and to vastly improved solutions for diagnosing, treating and managing the disease".

What are we meant to understand by "close" and "vastly improved solutions"? I think that many people will interpret this as meaning that an almost cure will be available to PwP in a year. However, based on the progress made in the 12 years since my diagnosis, I'd estimate that a cure is at least 20 years away.

Yes, we hope for scientific progress. But, I believe that rather than wait at the edge of our seats for this mythical creature the "research community" to present us with a cure, there is much that we can do ourselves to live better with Parkinson's.

Reference:

[1] Social-Media Hype about Diseases and Treatments Does Patients No Favors - Scientific American Blog Network

John