My Nonprofit Reviews
Review for The Cfids Association Of America, Inc., Charlotte, NC, USA
I say that I am a "client served" because the CAA purports to speak for me, a person with the serious neuroimmune disease now referred to as ME/CFS. They do not speak for me. They have refused to involve themselves in some of the most significant issues regarding this illness that would affect how it is viewed and treated, such as ICD coding used by insurance companies and proposed changes to the DSM. The CEO in an interview with CNN failed to point out known negative medical consequences for the most seriously ill patients of a therapy being discussed and even seemed to unquestioningly endorse it. The CAA does not act or speak in the interest of patients.
I've personally experienced the results of this organization in...
disrespect of the public through the CAA branding of the trivializing name "chronic fatigue syndrome" (instead of lobbying for a more appropriate name) and failure to drive home the debilitating nature of the illness.
If I had to make changes to this organization, I would...
insist on a change of leadership although frankly I don't know if reform is possible.