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change the definition of the disease twice since I was diagnosed, and has changed it to a watered-down definition that no longer represents the original illness.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.
I've personally experienced the results of this organization in...
..my physicians' unfamiliarity with the disease, the lack of testing and treatments for the disease, the social stigma associated to the disease, and the general failure for the understanding of this disease to progress over two decades. CAA was supposed to be an advocacy group, then changed to a research group but failed to notify patient stakeholders and still have not informed the media about their new mission, so the media still asks them for statements in their old capacity as an advocacy group.
If I had to make changes to this organization, I would...
...change the leadership immediately. I would be transparent about who is funding the organization. I would serve the interests of people with the disease CFS, and not those who are merely "unwell" or "fatigued". I would lobby the government to use an accurate name and definition to describe the disease. Most importantly, I would not use my position and money to suppress the truth about CFS.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
How did you find this group?
What, if any, change in your life has this group encouraged?
I've became an advocate in an attempt to undue the damage that they have done
When was your last experience with this nonprofit?