The Battle Against Snake-Oil………….

As I cast my mind back to March 2007 after the nephrectomy I cant help remembering what was on my mind as I surfed round the internet; you know the thing, that mad sense that “there must be a miracle out there” that somebody is hiding under a rock.

As you look at how people find there way onto KCR for example you can see that they are pretty much doing the same thing. They put a search into google and then hop onto KCR, read whatever they want and then hop off again onto the next search result.

Now you’d think that with all the information stored on KCR that there would be no need to hop off elsewhere.  Yeah, yeah I know it’s probably a tad arrogant to assume that we’ve locked down all the info available :) but to be honest it is safe to assume that we’ve nailed enough information to make the site “sticky”….. I’m glad to say that the regular readership is growing, however capturing the site hopers would be fantastic.

So why do they hop off?

When the decision to create KCR came in 2007 it dawned on me that the site hoping is something that people just do in desperation to find the “miracle”.  I did it, I surfed and surfed ignoring all the sites that said “there is no miracle” until I found sites that said “here it is, buy ya snake oil here!”  Instinctively I didn’t want to believe the harsher facts, I wanted to believe that there was some more comforting solution.

And there’s the danger. Yes, I’m sure it is safe to say that there are people out there who’ve had “miracle” results by standing on their head’s  sucking Goji Berry wine through a shark’s cartilage straw that’s been soaked in esiac tea strained through apricot kernels. However the reality is that many of these have no medical backing or efficacy and are massive hearsay outlier examples, it’s just a cruel way of extracting money from people when fear gets the better of them.

I’d love to work towards putting a stop to these snake oil salespeople.  The challenge on KCR is to bring all these supposed cures onto the website so they are listed and well understood, giving people a genuine reference.  Having said that, giving these cures any space on any site can often just advertise them even more …. And this is where we need a balance.

One of the reasons I’ve asked for Feedback for KCR on the new Kidney Cancer Support Network forum is to see how other folks believe we should deal with this kind of data, how’s it best displayed? How do we keep it up to date?  Yes, I’ve been given the FDA’s list of known fake cures, but there’s more out there and we need better explanations.

Posted under Andy Thomas, General

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