November 08, 2010

Just not feeling it. [Lots of f-bombs]

Dear [unnamed MS forum],

Back in 2005, the New York Times magazine did a small article on you, and how you were something new and unseen.  A place where patients were sharing their most intimate medical information with total strangers and detailing the course of their disease.  Fascinating, loaded with real-world experiences with tests, procedures, drugs and doctors.  At the time, it was a source of really good information [I learned about clinical trials] and if anyone appeared to be gaining financially by recommending a product, they were promptly booted off the site. It was also known that our information would occasionally be aggregated and sold to a pharmaceutical company.  Nothing personal, just some patient stats.  Hey, this is a very well-run, robust forum, they've got to make money somehow, right?

When I signed up I believe there were about 7,000 or so members.  Today there are over 22,000.  But apparently there are barely over 700 who are what's called Three Star members.  Three star members are those who are reporting things like sex, age, height, weight, prescription and non-prescription therapies, lifestyle changes, stuff like that.  In other words, the stuff that can be aggregated and put into a report for a customer to analyze.  That's 0.032% of the total population of users.  So, what are the other members doing?

Obsessing about every. little. thing.
Asking the same questions over and over, ad nauseum [there is a search box where you can find every single post with a word or phrase in it but does anyone use it?  Apparently not.]

Like this [Posts are real, Responses are mine]:

P:  How Much Pain Can MS Cause?
R:  I have pain when I do something I know better than to do like move furniture but I don't think MS has anything to do with it.

P:  Vertigo Has Entered the Picture
R:  And...what??

P:  My Spouse/Family/Friends Don't Support Me
R:  Well honey, I've read back through your posts here and I gotta tell ya, if you behave around your spouse/family/friends the way you behave on this web site, I'd drop your whiny ass off at a bus stop on my way out of town, I mean holy shit!!

P:  Scared to Exercise Now
R:  So you had a relapse after walking miles.  And that much walking is a rare occurrence for you.  Really?  Howzabout this:  DON'T FUCKING WALK FOR MILES IF YOU'RE NOT USED TO IT.  What are you, stupid? 

And today's winner is:
P: Oh My GOD!!! It hurts sooo bad!!
R: Oh for fuck's sake, obviously not that bad because you can STILL TYPE!

Yes, MS is different in everyone.  That is true.  But I really, really, really believe it's worse in those who don't stand up to it.  By that I mean, deal.  DEAL. Whining, anger and pity parties are complete wastes of time and ultimately get you NOWHERE.  So, stop.  Cut it out.  Enough.

It's a shame and I feel bad for the poor moderator. This site is more painful than an afternoon at Chuck-e-Cheese.  Well, maybe not.  I think kids at Chuck-e-Cheese are better behaved.

1 comment:

sherri said...

ha! i love this... i have been lurking around all those sites... okay, well 2 of them... at first i thought "hey! this might be helpful..." i created my profiles, filled in the obligatory info plus some...

the more i dug around, the more irritated i became. i'm sure there are some people there with good and viable information... kinda like shopping at a thrift store and digging for the clothes that are still good for the price...