Sunday, July 5, 2009

The difference in having PR

Yesterday marked the 70th anniversary of Lou Gehrig's "luckiest man" speech as he faced terminal illness with the disease now named for him.  Every major league baseball team honored Gehrig yesterday, showing highlights and having someone read the text of the speech.
Everyone knows about ALS or "Lou Gehrig's Disease", so it was a real shock to me to learn that only 30,000 Americans have it.  Compare that to a million with CFS -- 33 times as many patients and 1/33 as much public familiarity.  Most people can tell you at least a few symptoms of ALS, but most people (and many doctors) still think that CFS is either depression or overwork; they have no clue about the other symptoms that can make the fatigue pale by comparison. 
What's the difference that causes this disparity in awareness?  ALS has a famous name attached to it; CFS does not.  Supposedly Cher and Blake Edwards had it in the 1980s, but neither of them has stepped forward to take a lead role in getting attention and research funding.
Without a famous patient willing to be the public face of CFS, it wouldn't matter if we had a hundred times as many patients; we'd still be more obscure than the diseases that have a higher profile despite having fewer patients.
Who will step forward?

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