My Nonprofit Reviews
Review for The CFIDS Association of America, Inc., Charlotte, NC, USA
I would refer to myself as a "Client Unserved" by CAA. I have had viral CFS for over 20 years, and my disease is still referred to as "Chronic Fatigue Syndrome", there is still no FDA-approved treatment for the disease, and the CDC has been able to change the definition of the disease twice since I was diagnosed, and has changed it to a watered-down definition that no longer represents the original illness. As far as I am concerned, CAA has accomplished absolutely nothing. We have gone backwards. In fact, I suspect that they are receiving funding from those who hope to continue the obfuscation surrounding this disease. Their scientific director was employed by the CDC and contributed to 3rd revision of the disease definition, which cannot distinguish between CFS and depression. Their CEO seems to have had no work experience other than with CAA. There is something very wrong with this picture.
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I've became an advocate in an attempt to undue the damage that they have done
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