Monday, April 11, 2011

CFS Central: YOU'RE IT

 
Dear Dr. Coffin,
I was sitting near you at the State of Knowledge NIH Workshop when you said that the patients' online comments about you were "painful."  As the mother of a 25-year-old young woman who has been fully disabled with ME/CFS for ten years, and affected since childhood, I would like to tell you a little bit about "painful." ...
 
Lilly later clarifies:
I was sitting about eight feet away from the podium. I could see and hear very well. Dr. Coffin was indeed talking about his own hurt feelings.
 
* * *
Gee, I'm sorry his feelings were hurt.
 
Does anyone ever care about OUR feelings when they make derogatory and accusatory statements?
 
You're lazy, you're crazy, you just want to quit your job and live on the dole...  Does he think those are not hurtful to people who worked until they collapsed?
 
If they ever looked on the rude things that have been said to patients, they'd realize we're not emotional basket cases who can't handle a little stress -- we're strong people who've put up with a lot of sh** and verbal abuse when all we wanted was someone to help us feel better.
 
77% of CFS patients report a bad interaction with at least one doctor.  "They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009  We may go home and cry for a while, or whine to Mom after some doctor has verbally abused us, but then we pick up the pieces and go on.

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