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The CFIDS Association of America, Inc.
July 1, 2011

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.

The Great!

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

the impact of their actions or lack of action on public and medical perceptions of the illness and the nonfunding of biomedical research into etiology.

Ways to make it better...

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

encourage it to fold.

MY ROLE:
Client Served & I am a patient.

Review from Guidestar
Whittemore Peterson Institute
February 3, 2011

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.

The Great!

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

It has given me hope for treatments. It has helped to remove the stigma that comes with the ridiculous name "Chronic Fatigue Syndrome" as the research points to biomedical causation.

Ways to make it better...

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

I cannot presume to know what they should do; however, I would wish for them approval of NIH grant proposals and private funding.

MY ROLE:
General Member of the Public & I have given donations as I have been able and promoted the institute among those I know.

Review from Guidestar