My Nonprofit Reviews
lulu
Review for Nevada Center for Biomedical Research, Reno, NV, USA
A little over a year ago, I became very ill. Migraine like headaches every day, feeling like I had the flu with body aches, low grade fever and my memory started to deteriorate. I was 43 and finishing up my dissertation for a PhD in history. It took several months before a doctor mentioned "Chronic Fatigue Syndrome" and that day, when I got home, I cried. What an embarrassing diagnosis! Isn't CFS a name for lazy hypochondriacs? How can that possibly explain the seriously debilitating condition I find myself in? My doctors did not think much of the diagnosis either: "It is a wastepaper diagnosis" one said. I spent a lot of time on the internet, trying to understand what was happening to my body and to find a "real" diagnosis.
Eventually I stumbled onto information about the WPI. The WPI was created by a parent of a child with ME/CFS and a doctor who has worked with ME/CFS since 1984 when the major outbreak in Incline Village occurred. They had funded a scientist, Judy Mikovits, who had discovered a new retrovirus in most of the CFS patients she tested.
This retrovirus explains how patients with ME/CFS can have so many symptoms- gamma retroviruses can penetrate genes that control homeostasis.
Less than a year after the WPI published it's major study in the journal Science, scientists at the NIH and FDA confirmed that XMRV is definately associated to a high degree in ME/CFS.
The WPI has continued its research for ME/CFS patients as well as those with autism, chronic Lyme, and other neuroimmune diseases. For such a small operation, they have made a huge impact in the world of these diseases.
They are now getting ready to open a clinic that can treat people with ME/CFS. They are transparent about where they get their funding and what they plan to do with it. They are the model non-profit- putting their constituents first and doing cutting edge research in the face of a lot of institutional naysaying on the part of other organizations that have given little serious attention to this disease.
More Feedback
I've personally experienced the results of this organization in...
This is the only organization that is seriously researching ME/CFS. As such, they have given me the only hope I have that there may be real treatment sometime in the future.
If I had to make changes to this organization, I would...
Make sure that they had a lot more funding and many more grants.
