My Nonprofit Reviews
Review for The CFIDS Association of America, Inc., Charlotte, NC, USA
For lack of another descriptor, I am a Client Served; however, I am served something very unpalatable. The CAA does not represent the interests of the patient community. This feeling is widespread. A petition to dissociate from the CAA has netted close to 600 signatures (http://cfsuntied.com). The CAA has contributed to the mischaracterization of this illness by promoting an inappropriate and belittling name, Chronic Fatigue Syndrome, as opposed to the historical name, Myalgic Encephalomyelitis. They have failed to advocate with respect to case definition, ICD code, proposed changes to the DSM, and funding of research into infectious agents. This is not just a patient issue but a public health issue. After the Executive Director, Kim McCleary, in a CNN interview seemed to endorse the dangerous "treatment" of Graded Exercise Therapy, the CAA announced that they were not an advocacy organization but rather a research organization. Yet they are still available to give comments to the press as if they were an advocacy organization. The CAA represents the interests of the insurance industry and governments whom do not want to treat this illness as legitimate, not the interests of patients.
Review for Whittemore Peterson Institute, Reno, NV, USA
I have not had a direct experience with Whittemore Peterson Institute. But the research of Drs. Mikovits and Lombardi at WPI into the link between human gammaretroviruses and neuroimmune illness has given me hope for validation and treatments. I had a slow crash with what is belittlingly known as Chronic Fatigue Syndrome. This dramatically restricts what one can do and imposes heavy flu-like symptoms. In addition to benefits for patients, it is also vital that society become aware of how these retroviruses are transmitted and how best to test for them so as to protect the blood supply. The Whittemore Peterson Institute is at the forefront of such research.