Wednesday, March 2, 2011

Medicine and social media: dangerous intersection ahead

While enjoying a delicious, heart healthy meal at the not what is used to be Walnut Room in Macy's/Chicago, the DSP blog was informed about an individual with multiple sclerosis who had pursued treatment in Poland.  I was told that this individual went over there in a wheel chair, and came back walking.  Not only that, this person saw many other customers pursuing this treatment having the same results.

The current thinking about multiple sclerosis is that something, most likely the body's own inflammatory system, starts attacking the nerves, which results in a variety of debilitating problems such as abnormal sensation, fatigue, depression, pain, lack of coordination, muscle weakness and even paraplegia.  Some people with MS progress rapidly to significant problems, whereas others have a more benign disease course.  For those so severely affected, you can imagine why they would be willing to travel great distances and take great risks to pursue a new treatment that an Italian doctor developed to cure his wife.  

In what is likely a sign of things to come, multiple sclerosis patients interacting on social websites like Patients Like Me became aware of and knowledgeable about this new treatment much sooner than their doctors.  (Scientific American dubbed the treatment, "The YouTube Cure".)

The DSP blog thinks that patients who pursue this without collaborating with their doctor are driving their car recklessly.  My hunch is that most neurologists, once they researched the therapy, would suggest that before dangerous therapy should be pursued, it should be appropriately vetted in research trials, so that realistic estimations of benefits and risks can be properly assessed.  Ideally, the therapy could be compared to the placebo effect (see video--if a small pill can have a powerful effect--consider the placebo effect of having "surgery").  Doctors have seen first hand what patients with a stroke look like, and realize that a patient with MS pursuing this treatment might end up worse off than before the treatment.
Moral of the story--think carefully before being one of the first ones to drive your car over the bridge.

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