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Review for Solve Me Cfs Initiative Inc, Los Angeles, CA, USA

Rating: 5 stars  

In 1986 I was a healthy, energetic student working on my Ph.D. when I found myself suddenly bedbound with a mysterious illness that even my doctors didn’t understand. It was a frightening time during a period when there was incredibly little known about ME/CFS and like most sufferers I felt isolated and alone. The resources that the CFIDS Association of America (CAA) provided were a lifeline giving me a way to understand a complex and baffling array of symptoms when I might have otherwise questioned my own sanity, information and a language with which to educate doctors and friends alike, and the feeling that there in my dark bedroom I was still part of a larger community.

In the intervening years under Kim McCleary’s leadership and with the support of wonderful staff and board members, CAA has continued to be a trusted resource and tireless advocate. Suzanne Vernon has been a brilliant addition to the team and I am hopeful that focusing more resources directly on research will bring us all closer to treatment and cure. CAA has my infinite gratitude.

I've personally experienced the results of this organization in...

1) Research and treatments that have directly and positively affected my condition. 2) Brochures, newsletters, expert lectures, and information from the CAA website that have helped me understand my condition and explain it to others. 3) The hope that comes from knowing the CAA is providing direct advocacy tothe NIH and other organizations as well as the research they have funded.

If I had to make changes to this organization, I would...

I would ask that the CAA support adoption of ME/CFS as the name of the condition even if it doesn't accurately reflect the yet to be understood aspects of the disease. Easier said than done, I also think leadership needs to do whatever it can not to be distracted from the organization’s mission by subgroups of the patient population who sadly seem to feel so disenfranchised that they are willing to divert resources from the very organizations who are trying to help.

Role:  Client Served & I have used the information, education, and research this organization provides often on a weekly basis. .